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Hearing Loss: Come introduce yourself and connect with others
Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.
Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?
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Sistercrow, you may wish to join the Meniere’s Disease group here:
- Meniere’s Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/
How are you diagnosed with Meniere's disease
Good question, Gator. Here’s information from Mayo Clinic about diagnosing Meniere’s
https://www.mayoclinic.org/diseases-conditions/menieres-disease/diagnosis-treatment/drc-20374916
Diagnosing Meniere's Disease really doesn't result in a firm diagnosis (regardless of the magic number the doc uses to get reimbursed by insurance). There is no way to diagnose Meniere's other than to eliminate what it is not. In addition, most ENTs don't have the additional training necessary to make a firm diagnosis (but use the "magic" Meniere's number to get reimbursed). Unfortunately, there aren't lots of neurotologists; they have the additional training necessary to come closer to a correct diagnosis. It's estimated that 80% of those diagnosed with Meniere's actually have something else--and, unlike Meniere's, some of those diseases can be treated successfully.
Be aware of MAV (migraine-associated vertigo) and sticky platelets: both of these disease are commonly diagnosed as Meniere's, but both can be treated: MAV with migraine meds, sticky platelets with baby aspirin.
Another thing to be aware of is that many women wind up being diagnosed with Meniere's in the mid-40s, due to low hormone levels. My life is lived as though I'm normal as long as I take adequate hormones every day. I do have Meniere's. After it went bilateral May 24, 2019 (!!!), I struggled for a year to find a local doc willing to prescribe hormones for someone in their late 70s. During that year, I was functionally deaf and began to have ever-increasing crises where I had to lie flat for hours, vomiting into a kitchen garbage bag. No fun at all! Once I got on a good hormone replacement program, within TWO WEEKS my hearing returned to the level it had been prior to going bilateral and the crises stopped. The formula for replacement hormones: 2½ times as much progesterone as estrogen, to protect against cancer. I've taken very large doses of hormones for extended periods of time, and I did have breast cancer (Stage 1, very slow growing). However, the cancer didn't appear until more than 20 years after I'd taken large hormone doses every day, plus my mother had both breast and uterine cancer. Thus, bad genes may well have contributed more toward my breast cancer than the hormones I'd taken.
My post concerns ototoxic medications. I feel I might have hearing loss on the way as I continue taking the following. Bisoprolol, Pantoprozole, Furosimide and Enalapril. I sometimes have a ringing for days. It comes and goes. Discussions with my Drs. offers
little help and I feel like my next step is for physo help. Im retired, live in Florida, I have CHF and do well as I monitor things with the
Drs. But not the ears and not the medications. Just diagnosed as tinnitus. Anyone out there with similiar situation. Would love to hear.
@jdpait I have tinnitus but it is not bothersome. You may want to check out Dr Ben Thompson's YouTube channel. He's an audiologist with tinnitus himself. https://www.youtube.com/channel/UCuH8CgFikmhRc2ALsI0j4uQ
Tony in Michigan
Good Afternoon - My name is Denise and I have moderate hearing loss. I have mostly lost the high end and low end of my hearing, one due to Measles as a child the other due to loud sounds (too much rock and roll music on headphones), I also have tinnutis which I have learned to ignore. Since I can't afford $8,500.00 for hearing aids, I am using hearing aids that I bought on the internet. They make sound louder, but they don't help when I am in a noisy environment. I also have trouble making out individual words unless I am looking directly at the person. I always tell people I have hearing problems and they are generally helpful.
Thank you for allowing me to introduce myself. I look forward to your posts.
Denise
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1 ReactionHi @jdpait, welcome. I think you'll appreciate this discussion about ototoxic medications that @julieo4 started.
- Ototoxic drugs that can cause hearing loss or tinnitus https://connect.mayoclinic.org/discussion/ototoxic-drugs-that-can-cause-hearing-loss-or-tinnitus/
Welcome Denise. Are you able to work with an audiologist to adjust the hearing aids so that they work better for you?
Thank you Colleen. It's good to hear from you. Unfortunately, my hearing aids don't have any adjustment capability. My audiologist called them "amplifiers, not hearing aids." She wanted to sell me a pair of her hearing aids.