Anxiety and disbelief over sudden hearing loss and tinnitus

@rlsutton I'm being repetitious on this, but will say again that 'add on technology' can be very helpful in crowd settings where background noise is a problem for us.

Most quality hearing aid brands support small wireless hand held microphones that work with the BT feature of the hearing aids. Roger Pen, Mini mic 2+ and a few others are out there. Ask your hearing aid provider about them. Insist that your expensive hearing aids have the capability of connecting with them. Insist that your provider takes time with you to teach you how to use them.

My first experience with such a product was a tiny microphone that plugged in to my BTE hearing aid. It was 'hard wired' so I had a cord to connect to it. It showed big time! It helped me tremendously.

One of my most memorable experiences was being in a social setting where a group of women were discussing a rather heavy political topic. I did more than give my typical head nods and smiles. I contributed to the conversation! The reaction was most interesting. One woman, whom I had a great respect for, said "Oh my! Until now I didn't know you were smart!" The conversation shifted to 'What is that you're using?' Think on that one. Using that very visible device was worth it being seen. I participated and I belonged!

It was so comforting to find this post. I had a similar experience and the hardest part has been my own disbelief and shock at a sudden change of abilities. I experienced a "pop" feeling straining while doing push-ups in April. There was initially some mild discomfort, but felt silly for straining so hard I hurt my ear and continued with my workout. Everyone suggested it was pressure/fluid. Asked a nurse practitioner friend for advice, who suggested it was likely fluid and may take several weeks to resolve. My hearing immediately felt muffled, but I still felt I could hear, so I didn't consider it "hearing loss". Visited my own primary physician about a month after the event and she noted some redness in my ears and nose and prescribed me Flonase and Zyrtec. Again, I was urged to be patient until it resolved itself.

Fast forward 3 months after the initial "pop" and I finally saw an ENT after my hearing was still muffled. The doc took a few looks in my ears and casually said "I don't think this is fluid; this looks like a classic case of sudden sensorineural hearing loss". As I didn't even think I was experiencing hearing loss, I asked several questions. He answered the questions but seemed lightly tired and frustrated by my lack of understanding. I was so confused.

I then attended a hearing test with an Audiologist. It was more in depth than I had expected. I was absolutely shocked when the Audiologist showed me the results and noted knowingly, "yeah, looks like you have severe hearing loss, you weren't crazy thinking you couldn't hear!". She was nice, but once again the reaction felt so mismatched with how I felt. I never thought I couldn't hear, I just thought my hearing was muffled and blocked by fluid. I am still finding it hard to believe that I missed the beep prompt at 4k until 95dB. It feels so surreal. They promptly scheduled me for a hearing aid consultation, stating that would help significantly. I am happy to hear that there is a solution to help, but wish I could have access to some sort of counseling or detailed information to really understand the situation.

Googling has taught me a lot in the past few weeks. I now believe that SSNHL is real. Logically I believe that I do have severe hearing loss in one ear. I understand this is a very mild inconvenience compared to the experiences of others, but it is hard not to mourn (and worry about hearing as I age). I am so concerned that there is an underlying cause - paternal Meniere's (doesn't match my audiogram pattern), genetic Alport's syndrome (usually bilateral), barotrauma that was ignored, or just the general catchall of "pregnancy". I would feel so much better if I could nail down the likely reason so I don't just constantly worry it will occur again out of nowhere. I am currently pregnant and have scheduled a CT scan for immediately following childbirth.

All that to say... thank you for sharing your story, @chuckm. I have been feeling completely lost and confused that no one else has felt my same reaction to this unexpected experience. I am 36yo and am just so caught off guard by this "betrayal" from my own body! It can be so isolating.

@slebrown You would be surprised to learn how many people have similar experiences. I often wonder if I had not found support through the national organization "Hearing Loss Assn. of America", (HLAA) if I'd even be alive today. Diagnosed with progressive sensorineural hearing loss in my early 20s, by the time I was in my 30s I was terribly frustrated. No one understood what I was going through. My husband and daughter were very supportive, but friends were not. Learning about HLAA, which had a different name then, and getting involved, gave me my life back. I went 'public' with my hearing loss concerns and started a chapter of this organization in my community. Meeting other people who were dealing with the same issues was amazing.

Invisible disabilities are confusing to people. Communication is the basis of most relationships. Think about what happens when communication breaks down as we respond to something out of context. I'm sure you know. Next thing we know is that we become reclusive and stop doing things we once enjoyed.

There are answers out there. There is technology that works to keep us in the hearing mainstream, but we have to know it exists and ask for it. Talk to your audiologist about hearing assistive technology. If s/he doesn't give you the information you need, go elsewhere.

Here are 2 websites that have substantial information for you. http://www.hearingloss.org and www. centerforhearingaccess.org

Like it or not, we have to learn what is available and insist on having it in the technology we use or we don't get it. This is why participation in organizations like HLAA matter.

Julieo4

I will echo Julie's reference to the two websites. It's so important individuals looking at getting hearing aids, even before they finally get a hearing test, to research and read up on what a hearing test should consits of. The profession has Best Practices but not all Aud's thoroughly do all of them. The Center for Hearing Access (CHA) website in particular has a wealth of information and links to professional journal articles, information on assistive listening systems, the importance of getting HA's with both a telecoil and Auracast capable. Bring print outs of pages or the list of Best Practices to ask about and have them tell you what they do for each of them. Don't let them BS you or give an excuse about something when you have documentation in hand that describes it. The CHA website also has a list of hearing aids that have both telecoil and Auracast. Also, google the Dr. Cliff videos for a great explanation of what the Best Practices are. And see if there is an HLAA support group in your area. If not, many of the groups/chapters around the country zoom their meetings and are very welcoming to others joining in. You can check the main hearingloss.org website and look for button in the upper right corner that says, "Chapters." It will open a page where you can search by state. I've signed up for several groups and get their emails and notices of meetings and zoom links. Good luck.

@itsmeagain
Over the past year I have tried six different hearing aids with discouraging results. I’m here to happily tell you number six has done it.
This I found on the internet-$221.00! It’s Oricle and I couldn’t be happier. And I knew the minute I put them in my ears.
I realize not everything works for everybody but these work for me.

I have to say I had a similar experience lately with having a crown done. I am hearing impaired and wear two hearing aids. They put this plastic mouthpiece in my mouth that was too big for my small mouth. They gave me a numbing shot but when they started drilling the tooth down I was in a lot of pain. I had them stop and thereafter 9 more shots. Still pain. They put in the temporary and I went home with bad earache and fluid in my ear where the mouthpiece had stretched my jaw. My jaw actually locked when they took it out. I suffered for days after with fluid in my ear, aching, sore jaw and now I have this swooshing sound in my ear. Not sure if that is tinnitus cause it isn’t a ringing. It’s a month later and have permanent crown. Jaw is better, earache has subsided however I now still have the swooshing sound. So you are not alone. The sinus cavity connects the ears, nose and throat.