Help: Sudden Sensorineural Hearing Loss (SSHL) - very scary

Someone who posted on this forum a few months ago was able to recover his sudden hearing loss by going on an extreme anti-inflammatory diet/exercise regimen. He did it on his own initiative, not by doctors’ recommendation, having deduced correctly that the loss of hearing was due to inflammation of his cochlea. In private correspondence he told me he knew that steroids fight inflammation, and his hearing came back after a steroid injection (which he had known to get promptly). But it faded again in a couple of days. The doctor wanted to continue giving steroid injections. Patient, age 47, decided to try to reduce the inflammation by dietary means. It was tough but he claimed it was successful, and showed me his hearing tests reflecting his recovery. Doctor was not part of this success at all. I don’t know if such extreme lifestyle change is possible for everyone to follow, but shouldn’t it at least be presented as an option?

In general, as I educate myself about hearing loss I’m increasingly disappointed and frustrated that what passes as patient care for hearing loss is so minimal. For example, I never got counseling from any hearing practitioner in 20+ years of treatment that sudden hearing loss must be treated *immediately*— like within hours. Lifestyle, diet, and audio rehabilitation have been absent from any treatment discussion I’ve ever had with a hearing-care professional.

Your post also raises the issue that appointment-making medical assistants have not been adequately trained to recognize an emergency and schedule appropriately for sudden loss. Very concerning. This is your life they are playing around with!

ENTs and audiologists really need to do better.

I suddenly lost my hearing in my left ear. I went to an ENT doctor right away. I started getting steroid injections into my eardrum. The doctor told me the sooner you do this the better chance for recovery. After several steroid injections I sat down with my doctor. I asked him what the success rate was in getting my hearing back. He’s been an ENT doctor for 15++ years. He told me he’s only had one patient who has ever regained their hearing. He told me they had done everything they could. I started getting fit for different hearing devices. None of them worked. I was getting so frustrated. I started reading about Cochlear Implants and decided I wanted this. I had my cochlear surgery about 10 months after I lost my hearing. It was a slow start, but I’m so happy I did it. My balance is back, I can hear in my deaf ear with my cochlear and I feel somewhat normal now. It’s been a long struggle. Good luck to anyone who goes through this. It’s not easy.

Thank you for sharing your experiences. I'm an actively involved member in HLAA (The Hearing Loss Assn. of America). Through involvement I've met several people who have experienced sudden sensorineural hearing loss. While it isn't common, it happens and is traumatic. We are told that immediate treatment with steroids may help, but it is nearly impossible to get immediate treatment. First, the person affected tends to think it's temporary, so waits a few days to try to see a doctor. Often they see their primary care physician who has no experience with this, but refers them to an ENT. Trying to get into the ENT quickly isn't easy. So all of a sudden time has passed and it's too late for those injections to help.

I hate to say it, but this is common. Hearing loss is not considered an 'emergency' until it's irreversible. How horrible it has to be to be told "If you had been treated sooner.....etc."

The good news is that cochlear implants do help. Most of the people I mention above have gone the cochlear implant route and are back in the hearing mainstream. They've received a great deal of help and peer support by participating in HLAA chapters. It helps a great deal to know that you are not alone.

HLAA chapters have been holding meetings online via Zoom, which is captioned, during COVID. The good news is that those chapters have opened up participation to folks who don't live near active chapters. We have people from all over the country attend our chapter meetings held in Appleton Wisconsin! Soon they will be meeting in person again, but we are hoping to be able to provide hybrid meetings that will include everyone.

The national HLAA organization is holding a large national convention this summer in Tampa Florida. That event brings people from all over the country together to learn in an environment that is accessible and quite amazing. The exhibit hall is incredible as so many new devices and products in research are featured. The majority of attendees have hearing loss so everyone understands our unique need to communicate. These events can be life changing.

You might want to learn more about that HLAA convention. It's worth every penny to attend. More information is available at http://www.hearingloss.org The national website provides a great deal of information that you may wish to explore while you're there.

Is there an HLAA chapter in your area?

That is all such good information. Having been diagnosed with the SSN hearing loss 7 yrs ago, I’ve muddled through, and only recently decided to go the Bicros route. Now I find myself hardly ever wearing them because they really don’t address the root problem. Those of you out there who chose Cochlear implants are happy with the results? And is that extreme anti-inflammatory diet Really a thing? If so, would love to see what that diet entails. Thanks. Wendy

It is a very scary thing. I am very sorry that you are going through this. Keep up with the treatment and follow up with ENT. That happened twice to me on the left ear, first time; two weeks after after I had a upper left back molar root canal done. The second time was the next morning after a swim in a condo pool. Please think back to any recent activity that caused bad bacteria to get in the mouth, nose, eustachian tube, or ears. For the first time, my hearing came back much later like a year after injected steroid treatment, antibiotics. The second time hearing came back a week after starting antibiotics. I strongly suspect bacteria got in there via those activities. When my hearing came back, clicks, pops and ocean sensations went away. By the way I have a severe bilateral hearing loss with two BTE aids. My hearing loss has always been stable all my life other than these two particular infections

@wendymb

An anti inflammatory “diet” is not extreme by any means. Avoiding processed foods and sugar as much as you can and eating whole foods the way we used to when I was growing up benefits your entire body. Eat more organic fresh vegetables and buy grass fed beef and organic chicken…wild seafood and avoid GMO foods. Avoid refined flours and sugary drinks…they are not doing you any good.

Read your labels on products and you will find that most have some type of sugar in the ingredients along with a bunch of ingredients that are unpronounceable. Sugar, by the way is measured in grams and we don’t use the metric system in the US. This is a Big Agriculture ploy to deceive you into not knowing how much there really is.

Food has been processed so many times to make it convenient as pre packed meals, it’s almost unrecognizable. The fresh vegetables are in your supermarket and there are more nutritious products available than ever before.

Goggle anti inflammatory diet and you will get a glimpse of what you should be eating. Start reading and get a couple of cookbooks about whole foods or true foods . Cook from scratch…it’s not any more time consuming or involved prep.

Going this route will go a long way to eliminate the obesity epidemic and all the chronic diseases associated with being overweight. Every organ in you body will thank you and you will know it by the way you feel and look.

Food is medicine and it’s very powerful. Exercise is important but you can’t outrun a poor diet. You have to do the research and it doesn’t mean you have to forgo a pizza or a decadent piece of chocolate cake occasionally. It’s how and what you eat the other 90% of time.

Yes, you can reverse a lot of the medical problems and illnesses. The FDA, the agricultural and pharmaceutical industries are not your friends and are not interested in your health and well being.

In addition….most Doctors of any discipline don’t know enough about nutrition to offer advice. I think Nutrition is a minor course given in medical schools today and just glossed over.

FL Mary

I was awake when it felt as if a switch had turned off all hearing in my right ear. Like many others, I assumed it was temporary. When I woke the next morning, I experienced vertigo so intense that it was three days before I could get out of bed without having to crawl to keep from falling. By the time I was able to drive myself to the doctor's office, four days had passed. I had a feeling of fullness in my ear along with the popping, gurgling, and very loud ringing sounds. The PA sent me to PT, which of course, was unsuccessful. By the time I was able to get to an ENT, two weeks had passed. By then I had completed an MRI to rule out stroke or tumor. I was unaware that sudden hearing loss is a medical emergency. None of the steroid treatments helped, and they said nothing more could be done. I had nada hearing in that ear. After researching, I read that acupuncture sometimes helps, but after spending lots of money and several weeks of treatment, it yielded no change. I tried the bicros hearing aid which would not stay in my ear (tiny canal), and it sounded like hearing through a tin can. I gave up until 8 months ago when I relocated my residence and found a new ENT. By then, my hearing had been gone for almost two years. Finally...success. No, I did not get my hearing back, but I did receive bone conduction surgery with a processor. What a game changer! I can now tell which side the sound is coming from. I can hears words and sirens and music. It is not perfect; I still have a little trouble in crowded situations, but it is about as close as I will ever get to normal hearing. The funny thing is that I still hold onto this silly hope that I will wake up one day with my hearing back. No one, and I mean no one, can conceive of the journey that occurs when you suddenly lose your hearing, not unless you have experienced it yourself. Talk to a good ENT about all of your options.

I did not have sudden hearing loss. Mine is sensorineural/progressive. The Cochlear Implant has been wonderful. My only regret is not doing it sooner. I had it done in 2005!

Agree

Thank you for the explanation. I was using the word “extreme” because that’s how the writer described it so I was curious as to what he meant by extreme. As for the anti inflammatory diet as you describe it, it sounds great. Thanks again for taking the time to reply.