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So happy to have found this thread

Posted , 4 users are following.

marguerite44520
marguerite44520

Hi, I have been suffering with VN for 3.5 years. I started with severe spiining of my surroundings that put me on the floor. After that I have been miserable with most of the same symptoms that you have all described above. After many trips to my doctor, two Ents and a neurologist I found a neurologist at norhtwestern hospital in Chicago who finally diagnosed me. He and his partner treat nothing but vestibular discorders. We tried a couple of medications but neither worked, I decided to try the water and wait it out because he said that the nerve damage is permamennt but over time the brain begins to compensate and eventually you will feel better, never will I be 100% but better. I started to feel better at the two year mark and for about 6 months I was about 65% better which I could have lived with. Unfortuantely that did not last, it came back with a vengeance last March. I am miserable and what I find most frusttrating is that people just don't understand. It is not like you have a headache or back pain, people get that. When you try and explain how you feel and can not do certain things anymore it is pointless. I have not been on a plane in 5 years, I can not go into a noisy restaurant and forget a good concert. I work downtown Chicago and I pray that I can just make it to and from the train. The doctors are all very surprised that being on the train or in the car doesn't bother me. Besides being in bed or jiust sitting these are the only times I am ok. Sometimes I dread getting out of bed in the morning. Once again I am so happy to have found this thread, it is good therapy to vent to people who get it.

0 likes, 10 replies

10 Replies

  • beata8413
    beata8413 marguerite44520

    Posted

    im sorry to hear that i wanted to write to you because i myself live in chicago well in elmwood park and i struggle with vertigo from ear fluid and im trying to find so many home remedies to do because i battle with anxiety so any meds i take i get anxiety over so its hard for me and for me the same being in a car im okay with and ive only had this for 8 weeks i hope it goes away soon its nice to hear that you are half way recovered and i hope for more recovery too you i hate waking up in the morning having to guess if ill be fine or dizzy and nauseous it is so miserable but we need to continue on and keep fighting 
    • marguerite44520
      marguerite44520 beata8413

      Posted

      I hope yours clears up soon as well. I think I am one of the odd ones. My neurologist said that only 5 percent of his patients have a reoccurence after having a good amount of relief. I was so stunned when it got so bad again and this past week it has been brutal and the hardest part is trying to figure out if you did something to aggravate it. It is so frustrating.
  • debbie82116
    debbie82116 marguerite44520

    Posted

    Hi Marguerite

    Sorry you've been suffering so long...thats brutal. Did you try vestibular rehab? It's the only thing that helped me!!

    Debbie

    • marguerite44520
      marguerite44520 debbie82116

      Posted

      Hi Debbie,

      I started with the balance exercises but then my neurologist said that they will not work for nerve damage. How long did you have the VN?

    • debbie82116
      debbie82116 marguerite44520

      Posted

      The first time i had VN it lasted 2 years. I didnt know about vestibular rehab until way past the one year mark. The 2nd time i got it, it lasted only 4 months because i started the rehab exercises 2 weeks in. You will not be able to repair the damage to your balance nerve but with rehab you can retrain your brain to get used to the effects of the damage.
    • marguerite44520
      marguerite44520 debbie82116

      Posted

      Debbie I do still have the exercises given to me from a PT from Athletico. I am assumimng that these are the ones that you are referring to when you say rehab exercises. Staring at on object on the wall, one foot in front of the other and then switching etc. walking down the hall and looking side to side, I know there are others but i can not think of them off the top of my head. Does that sound right?
  • dizzyear
    dizzyear marguerite44520

    Posted

    Hi Marguerite,

    I am curious about your comment  'I can not go into a noisy restaurant and forget a good concert.'   Do you have sensitivity to noise, does it cause more dizziness?   

    • marguerite44520
      marguerite44520 dizzyear

      Posted

      Yes, it sure does. When I had a good period of 6 months I was able to go to a Cubs game. My first one on two years, I used to go about 4-6 games each summer. I could not even fathom going to one now, I am pretty much a hermit.
    • dizzyear
      dizzyear marguerite44520

      Posted

      Hi Marguerite,

      Noise induced dizziness is a common symptom of Superior Canal Dehiscence. If you search online there are some good descriptions of the symptoms. I happen to have this condition. We can discuss more if you think your symptoms fit with this condition.

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