Hello all. New to this community and new to complete hearing loss.

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melissaanathea

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Hi there. My name is Melissa and I lost my hearing completely a year ago due to Meniere's Disease. I have decided to stop feeling down and would like to connect with a community that might have some advice on navigating this new world for me.
Thank you and take care.
 
I too, have lost nearly all my hearing in both ears to this disease. I am also learning to navigate to this loss which has been gradual/sometimes sudden, deafness and now I am profoundly deaf. I wear hearing aids which give me some sound recognition. I would like to correspond with you…maybe we can be of help to each other. Until right now, I have not known anyone wiho has Meniere’s, who has become profoundly deaf with it.
 
Hi there Dee,
Thank you for the reply. I was diagnosed with this disease over 7 years ago. My hearing loss started out gradual on each ear. I wore several different kinds of external hearing aids until one day the right ear went out completely. A year later I lost all hearing in the left. I didn't have much time to deal with this before a month went by and I was approved for bilateral Cochlear implants. I had the surgery and was back to hearing sounds within two months. Truthfully, I had to come to terms with the high pitched non-human like sounds. But something was better than nothing. I had the implants for a year and then contracted COVID last August 2022. A week later my implants stopped functioning. I saw so many doctors including the Cochlear techs to end with the diagnosis that the implants work but they believe I have lesions in my brain that are causing the auditory failure. I head back to the Mayo Clinic in November for more MRI testing. That's probably the shortest version of my story. I have been told that this is probably my new normal. So I have decided to reach out and look for advice, opinions or ideas on how to better communicate, get through environmental and situational experiences and just live a good life with no hearing. It would be great to chat with you about Meniere's.
 
hey @melissaanathea , welcome! I lost my hearing a year ago in an accident. Before that I was only single-sided deaf, but the accident resulted in permanent loss of hearing to my other ear. It is definately a life-changing experience and one that you will sure to need support in. From what I have experienced, Alldeaf seems to be a very safe space to ask questions and get support from, whether you are born deaf or late deafened. There are a lot of great people here that certainly helped me get through this whole new world to navigate.

My advice. Take it day by day and find out things that work for you specifically. Don't worry about fitting in with both hearing and deaf groups right away, as you are trying to get the lay of the land so-to-speak. I had to get used to the deaf natural state and that in itself after being able to hear to not be able to is a huge feat! You may go through some really low periods. If so, reach out. Sometimes strangers can be the best therapy! You may also go through periods of " I just want to fix my hearing ASAP!" and go through a while array of hearing aids, technologies to assist. Again...breathe and take your time to navigate because without any of those aids and assitive technologies, you will be amidst your own silence when you take them off. Research. Ask questions. Don't be afraid of a counselor or therapists. Join some deaf groups, or forums like these to help you feel not so alone in this new endeavor.

I hope this helps and feel free to message me anytime if you want a new friend to chat with :)
 
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