Concussion leading to Bilateral Vestibular Loss
 

Hey guys, I just wanted to post an update regarding the post concussion syndrome I've been dealing with for the last 4+ years. It turns out the constant "foggy" feeling and shaky vision is from a loss of inner ear function. It's called Bilateral Vestibular Loss or Deficiency so I'm told...I've wondered all this time when it's going to stop and now I know it may never stop. This occurs when the balance portions of both inner ears are damaged. The symptoms typically include imbalance and visual symptoms. The imbalance is worse in the dark, or in situations where footing is uncertain. There are excercises that I'm doing to help with the balance and shaky vision which seem to be helping, however it is incurable at this point. They are working on a new technology that would regenerate the inner ear hair cells. This may be available within ten years woo hoo! If you feel that you may be in the same boat let me know and I can get you some more info...or just google it and you'll come up with quite a bit as well. I just had a nice two day stint at Mayo which I must say have some top notch doctors who had me pegged after a couple of tests.

I would also like to say to all of you out there struggling day to day to stay positive and have fun with what you have. Since my life changing concussion I met a beautiful women that I'm now married to with two wonderful kids. My career is going well for the most part although I still struggle a great deal with meetings and certain social activities. I only say this because i know how hard it can be and how down this thing can take you. I had it pretty bad to say the least especially the first year and half but things are definitely much better today.:)

Others with long-term bilateral vestibular disease brought on by Meniere's
 

I have been looking for others who are dealing with this BVD. I have talked to people on a website who have Meniere's disease but only in one ear. I have had Meniere's in both ears and this has caused the BVD.

I have had the BVD since 1992 after suffering the Meniere's disease in my other ear. It has gotten progressively worse since. Had to go on Disability in '92 for about 3 years and then again 6 years ago and will now have to stay on disability. I am interested in finding others who have had this for awhile and see how they are doing and if they have found anything to help. I can't exercise anymore and have to rest quite a bit.

Would love any input from you or others. Thanks so much.

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Jrunner,

Thank you for your story and encouragement.

How did you get diagnosed? What tests? Do you have to go to Mayo? Specialist?

I'm almost 2 years and the foggy feeling is intense.... Do you have headaches that are debilitating? Did they go away?

I don't have any help / treatment for my condition anymore... Just had some PT in the past and am wondering if I should be getting the tests you had. What could I pursue or who specialist wise?

I googled a bit after reading your posting and I do have the balance / dizziness issues that worsen in the dark and with fatigue. I know that could be just basic PCS but can I do anything?

Thank you for any info.

I do have similar symptoms foggy feeling, cinder block head, dizziness (non-vertigo), imbalance (worse with fatigue) etc., Not much help from any one after all the tests, MRIs many times.

Interesting to know about BVD and thanks for the message. For me sound (even fridge noise), people talking, street noise, stores etc., makes me dizzy. Ear plugs helps some what.

I will be seeing a so called specialist in 2 weeks and had to discuss seriously about this.

This is a great post for me. I have bilateral problems. A fall five months prior to severe onset may be the key. No doc has acknowledged the possibillity. It took a vrt to see these probems. I've been on disability for a year now and losing the majority of my abilities has been hell. I would love to be normal again, there's so much I miss. It's like you are living life out till it's your time. Fortunately my wife has been soooooo understanding and supportive.
Let's all talk more, I'm going to Mayo this month but I'm so apprehensive with my past experience.
Mike

Had never heard of this, but the whole foggy thing, with balance issues-something else to discuss with the dr. Thanks!