Hearing Loss: Come introduce yourself and connect with others

@jett215 I know Macungie. My brother lives in Emmaus. We are trying to start Chapter in the Lehigh Valley, but I only have 3 interested people so far. I am going to send you a private message through this site to give you my email address and also to give you some info on our virtual chapter meetings. We have one coming up Oct. 26 on Assistive Listening Devices at 7:30 pm on Zoom.

Hi. I am Jen. My 12 yo daughter has lost 96% of the hearing in her left ear. A hearing aid won't help so, we are looking at cochlear implant surgery in early 2021. I am hoping to connect with other families who are in a similar situation. I'd love to connect my daughter with another young person with a CI

@jenfb, Hi Jen. The national organization, Hands & Voices, is a parent support group for kids with hearing loss. In Michigan, they are a very strong organization. I recommend connecting with them https://www.handsandvoices.org/
Tony in Michigan

@jenfb / Hi Jen. I'm a senior with a CI that acquired just a few years ago. Perhaps it would help if you indicated the area you live in, to help spur specific suggestions?

Hi Jenfb, If you live in a region where there is an HLAA chapter you will likely find many who have cochlear implants. Our chapter in Wisconsin awarded a scholarship to a young woman who is bilaterally implanted. Her story is heartwarming. CIs have become far more common in the last decade. Definitely a good idea for your daughter to meet others with cochlear implants.

Thanks, I will connect with them.

good morning and thank you for having this group. I woke up last Sunday morning with a sore throat, which quickly went away and I felt fine all day. Monday, I awakened with congestion in both ears. right ear cleared up but Monday afternoon when on the phone I noticed I had no hearing in my left ear. Tuesday morning experienced significant dizziness and vomiting. was fortunate to get in to see an ent dr Tuesday morning. had an audiometric test and was diagnosed with sudden sensorineural hearing loss. there is no hearing in the left ear at any range. was put on a regimen of 3 doses of 20mg of prednisone daily with valium for the dizziness and zofran for nausea. I am scheduled for an mri tomorrow morning. I have never had any hearing problems previously and am in good health. I am not on any medications until now and exercise regularly. ent dr says that next step will be to have intratympanic injections. in doing "google rabbit-hole" research, I have come across various other treatments including, HBOT, pulse therapy, fibrinogen/LDL apheresis and a current phase I/IIa study of intratympanic PIPE-505. I have been told that sshl is idiopathic with recovery being random. would appreciate hearing from others with a similar experience and how they proceeded. thank you.

Read up on Meneres Disease, that may be the issue. The dizziness goes along with that, the feeling like you just got off a carnival super twister ride. I’ve had Meneres for decades and isn’t fun but don’t need any invasive treatments.

reply to jjc: Jon is correct in that it does sound suspiciously like Meniere's Disease when you have V&V (vomiting and vertigo). Can't tell from your ID, but, if you are a female, particularly one in her 40s, think about trying hormones. I've had Meniere's most of my life. During my 20s and 30s I had two classic V&V crises, both brought on my temporarily ceasing birth control pills (i.e., hormones). During my early 40s, I was considered "too old" to take birth control pills. Each month I had ever more serious V&V episodes within a day on the onset of a period. After eight months, I found myself spending hours on the bathroom floor in a pool of vomit--not a pretty picture! My primary doc and I didn't need lots of research to see that there appeared to be some connection with hormone levels, so we began to explore what would be "safe" for someone in their 40s. We spent four years seeking the right combo, and I was increasingly ill with V&V episodes that lasted 12-15 hours, 2 or 3 times every week. Lost all hearing and balance function on my right side. Because much of my job could be done at any day or hour, I was able to continue to manage a small publishing company and do frequent travel connected to the job, but it was a constant struggle. Finally, an OB/Gyn from Texas that my husband and I fished with whenever he was in the Northwest, told me exactly what I should take as replacement hormone (HRT). Less than a month after starting his program (with my own doc's approval), I quit having crises of V&V and was able to begin a program of vestibular rehab. Unfortunately, I had permanently lost both hearing and balance on the right side, but, with daily rehab exercises I was able to be active outdoors and continue to work in the sportfishing publishing world.
Then, May 24, 2019, at 6:45, the Meniere's went bilateral by attacking my left ear, which, at 77, already had some age-related loss. For almost a year I was close to functionally deaf. My new primary doc has had breast cancer so has a great fear of any HRT and wouldn't prescribe it. As the deafness continued, I had more and more episodes of V&V, until I wasn't able to function normally, was afraid to drive on the highway lest I'd need to pull over and some kind policeman would have me carted off to a hospital. I was desperate, so finally found a local doc willing to prescribe HRT. In less than two weeks not only did the V&V cease, but my hearing returned to the level where it had been prior to going bilateral. In early May, I started two doses of hormones every day, balanced with 5mg progesterone for every 2mg estrogen, which is a "safe" combination not likely to cause cancer. By August, I was able to cut back to a half dose every other day, and I'm about ready to try half doses every day...as long as neither the hearing I have left or balance are affected. I did go to a vestibular PT to brush up on the latest VRT (vestibular rehab therapy). At 78, I can now wade rivers, hike in difficult trailless terrain, and live a normal active life. I can't begin to say how exciting it was to hear things again: birds, voices, even everyday things like hearing that the car is running rather than depending upon the gauges! I can hear the dishwasher or washer instead of having to touch the sides of the appliance to feel if it's running.
There has only been one study of women with Meniere's and hormones, done in China, but it does prove that a fairly high percentage of middle-aged or older women with Meniere's will respond to HRT.

thank you for the prompt response. sorry to hear about your experience with meniere's disease. dr mentioned that meniere's can be a cause, but only had the one serious bout of dizziness and vomiting on Tuesday. both of which have improved. will discuss at length with dr after mri. thank you!