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5 years inner ear imbalance losing hope

Posted , 7 users are following.

amanda05818
amanda05818

5 years still the same everyday heavy head loss of balance,feels like I'm walking on a tight rope.im propped up on pillows but it's bad TNT can't sleep. glad there's ppl out there with these symptoms so I'm not crazy but wish someone could help us

1 like, 12 replies

12 Replies

  • arria
    arria amanda05818

    Posted

    Hi Amanda, Oh I have been walking on a balance beam for 3 years!!, very fatiguing.

    Some of us have discussed that we have a clamp - initial brain safety mechanism that does not release.

    from VEDA

    CHRONIC (LONG-TERM) COMPENSATION After the initial compensation phase, the cerebellum slowly releases the clamp, gradually allowing more signals from the inner ear to pass to the brain. The brain can then fine-tune its calculations in order to account for differences between the signals received from damaged versus undamaged vestibular organs. Such compensation can’t occur if the cerebellar clamp remains in place. For most patients, the movements made during normal daily activities are enough to achieve chronic (long-term) compensation, usually in two to four weeks after the injury has occurred. Once this chronic compensation process is complete, the patient is essentially symptom-free. If unsteadiness and/or motion-provoked dizziness persist after that time, compensation is not complete and the physician may prescribe a program of vestibular rehabilitation therapy (VRT). (In my case VRT did not help)

    • gillian76726
      gillian76726 arria

      Posted

      Very interesting. Guess I am one of those that the clamp' didn't happen to,either!  nor the VRT exercises.!!
  • rita52071
    rita52071 amanda05818

    Posted

    LOL  no you are not crazy......believe me.......Can't wait for someone to post they found the problem and I'm doing great!!   Please read all the other stuff that we posted...Might help.......
  • sue1610
    sue1610 amanda05818

    Posted

    Hi Amanda , i too am there. its awful and only the people who read and wirite on these threads understand how we all feel. I started with Vertigo almost 2 years ago but then had all the tests etc at the hospital and saw the physio who i must admit explained more to me than any dr has done, she told me i would never ever return to normal and the brain has to try and be retrained.  I now feel i suffer from anxiety, panic attacks, depression ad the physio sai this is normal with this condition.   Can i ask if everyone else manages to hold full time jobs down at all or does anyone claim benefits such as ESA ?  only i have heard different things ?  What about any other benefits can anyone claim? 
    • rita52071
      rita52071 sue1610

      Posted

      Hi Sue...yes your brain does need to retrain itself I was told that when I went for vestibular rehab...helped a little...medicine also help.....Still suffering after one year   constantly going to drs....Its horrible.....This is a person that saw drs twice a year  ..............
    • rita52071
      rita52071

      Posted

      actullay i suffered for over 30/ 35 years with this on and off...last year has been the worst almost constant and hasn't stoppped
    • amanda05818
      amanda05818 rita52071

      Posted

      yes I'm convinced I'm going to live with this forever.done everything with dr like everyone else on here has I am going bk again.i did notice someone said somthing about drinking a lot of water.i do to feel abit of relief with water. coffe sets me off bad but I do drink it still.my ears get tight.wow 30 yrs is so long I really hope dr start looking into this soon
    • rita52071
      rita52071 amanda05818

      Posted

      yep i drink 8 glasses of water a day....was just going to call my dr. because she wanted me to go see this other ent doctor...I am so so tired of going to dr and the money I am spending is killing me.....Wouldn't mind if I was better but Im not.............I also made an appt with an opthamologist...cant get that appt till end of February.....and of course theres that other dr that checks thoroughly for eye alignment........Been on computer all night yesterday to see for public transit....not far from me but dont think I will handle drive.......Yucky day here  cloudy windy etc,,,,,,I am so tired of checking all this stuff out.........
  • workingmom
    workingmom amanda05818

    Posted

    So sorry to hear. In the last 5 years what have your doctors said? Have you ever been diagnoised with any form of vertigo? What have you already tried?
  • arria
    arria amanda05818

    Posted

    Public TV has something called Brain Fog Fix, tonite, I must watch that.  It will probably repeat for a while.
    • angie_69215
      angie_69215 arria

      Posted

      I live in san diego county do you know what channel or time.

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