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Old 04-10-2021, 09:34 PM
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Default Sudden Sensorineural Hearing Loss (SSNHL)

Since joining the forum four years ago, I’m usually a regular visitor and poster, visiting almost every day. That changed a couple weeks ago – this is the first time I’ve logged in since I woke up at 2:30am on March 24 with a splitting headache…my eyes felt extremely sensitive to light, I was nauseous - real migraine style stuff. I popped an Ibuprofen and went downstairs to lay on the couch so I wouldn’t disturb my wife to ride it out, but around 6:30am, I started to notice that my left ear started to feel “full” and muffled. By 7:30am, I was almost completely deaf in my left ear.

Over the course of the next two days, I had maddening experiences with an Urgent Care and my own doctor’s office during which the staff at each facility failed to grasp the seriousness and severity of the situation. The Urgent Care was content to send me home with the recommendation to take some Sudafed and follow up if things didn’t improve. My own doctor sent me home with a prescription for antibiotics, claiming that my right ear was infected (turned out later, it wasn't) – when I expressed disbelief and asked how it was possible that I lost hearing in my left ear if the right is infected, she said “Yes, that is strange. Once you’ve finished the antibiotics, if it hasn’t improved, we’ll refer you to an ENT.”

At that point I started researching my own symptoms, and every resource on Dr Google was pointing to the same conclusion: sudden hearing loss in one ear over a very short time frame is a medical emergency. Off to the emergency room I went on Saturday, March 27. It’s a decision that may very well have saved some ability to hear using my left ear. The ER was able to consult with an on-call ENT, and recognize the seriousness of the condition – they started me on high dose oral steroids, and made an emergency referral to an ENT.

An audiogram at the ENT’s office on March 29 diagnosed me with sudden, profound hearing loss across all frequencies in my left ear. Technically, I could still “hear”…as long as things were louder than 80 decibels on very low frequencies and over 110 decibels on higher frequencies, I could make out some vibrations. The condition is known as Sudden Sensorineural Hearing Loss (SSNHL). It strikes about 5000 people a year in the US, but no one really knows what causes it. Best guess is that it’s precipitated by a viral infection. Prognosis for hearing recovery is generally 50/50, with odds worse for those who suffer profound loss, better for those who receive treatment within a week. For those who do recover, the majority of hearing recovery occurs within the first 3 weeks, with minor gains possible in the coming 3 months. Full recovery occurs in only 5-10% of cases.

Before I fast forward to today, I have to say that last week was quite literally the most difficult week of my life. Complete hearing loss in one ear is a mixed blessing – while I was extremely grateful to still have the use of one ear, complete loss of the other ear created surprising and overwhelming challenges beyond just making it more difficult to hear. There’s absolutely no way to judge what direction sound is coming from – virtually everything sounds like it’s coming from the right, in my case. Our brains can do amazing things to compensate for lost senses, but unless you can physically see the source of the sound, this isn’t something our brain can fix without stereo hearing. Then comes the roaring tinnitus – our brains often compensate for hearing loss with incessant roaring or ringing in the ears. In my case, the tinnitus rapidly increased in volume so much in my left ear that it was louder than the true hearing in my right, making concentration on any tasks almost impossible, not to mention further impairing my ability to hear people talk. And sleep vaporized. It’s impossible to sleep with a jet engine roar in your left ear that never shuts off. But besides the obvious quality of life issues presented by this sudden loss of hearing, I was also deeply concerned about my livelihood – I’m a professional pilot, and complete loss of hearing in one ear is disqualifying. This situation was threatening my career and my entire family’s quality of life going forward.

To make a long story longer, I’ve since been to the ENT twice for injection of high dose steroids directly into my inner ear. I’m incredibly grateful to be one of the lucky ones – since the injections started, I’ve seen an agonizingly slow, but steady improvement in my left ear. I was ecstatic last Wednesday when I could hear a faint, vague rustle when I rubbed my hand across my left ear. On Easter, if someone snapped their fingers loudly enough directly behind my head, I could not only start to hear it in my left ear, but I could accurately tell which side of my head it was on about 85% of the time. On Monday I cried tears of joy when I could barely make out an electronic, tinny sounding “voice” when my wife talked at a normal volume within a foot of my left ear.

On Wednesday and Thursday, I finally tried metal detecting again, and used earbuds – I quickly found that not only was the volume in my left ear still greatly reduced, but it was also tremendously distorted and all the tones in my left ear were several steps higher in frequency than they should be, a condition called “diplacusis”. Still, I was a tremendous relief to find that I could still get out and truly enjoy myself while detecting. I even came home with a silver quarter!

As of today, my condition has improved tremendously compared to this time last week, but I still have a long way to go. I can hear my cell phone now if I hold it directly to my left ear at a reasonable volume – the volume is greatly diminished, but I can make out the words. The tinnitus has reduced to a more reasonable level – close to what I’ve always had in each ear – and I’ve finally been able to sleep again for the last couple of nights. I’m reasonably certain that I’ve recovered enough hearing that a hearing aid will be able to help, and my flying career is no longer in immediate danger. I’m absolutely thrilled and grateful that I’ve had this much progress, and I’m optimistic that I might be one of the lucky ones who may approach near complete recovery. My next ENT appointment is on April 15 – another steroid injection, but also my first full audiogram since onset, so I’ll be able to put firm numbers on my overall hearing recovery.

I wanted to write all this down for a few reasons. First, I wanted my friends here at FMDF to know why I’ve been MIA for a little while. Second, it’s actually therapeutic for me to talk/write about it a bit – and keeps some of the pressure off of my wife and family, who have borne the bulk of my stress and have been rock solid bastions of support.

But most importantly, I wanted to raise a little awareness of this condition. If you experience sudden hearing loss in one or both ears, DO NOT wait, and DO NOT go to an urgent care or even your primary care physician. GO STRAIGHT TO THE EMERGENCY ROOM. The National Institute of Health, the Hearing Loss Association of America, the Cleveland Clinic, most ENTs - virtually all major medical institutions and ear specialists familiar with the condition consider SSNHL a medical emergency. Many general practice doctors are not familiar with the condition, and will misdiagnose the condition as allergies, standard infection, etc. But the window of opportunity for treatment is small – if not appropriately treated within the first week, the chances of any hearing recovery is very low. Unfortunately, there are many people who received the proper diagnosis too late…if I had listened to the first two medical professionals I visited, I would have been one of them.

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  #2  
Old 04-10-2021, 10:22 PM
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Trips to the ER saved my life in 2012 because I was quickly tested and checked into the hospital due to pain in my right side, which I initially thought was an ulcer flare up, but turned out to be stage 2 cancer...rapid onset. Another trip a few years later to the same ER, led to emergency surgery to blast up a kidney stone (7 mm) stuck in my tube between the kidney and bladder. I mean immediate surgery, and I was back in the Castle the next day. Now I do not fool with the regular doctor, straight to ER for anything i think is serious. So you give good advice, and it is much appreciated! Good luck to you! I wear a HA in each ear and have tintinus, and have found with the HA in, it is much less!

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Old 04-10-2021, 10:23 PM
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Get well soon, Ill keep you in my thoughts and prayers.

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Old 04-10-2021, 10:34 PM
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Jeez, that is really awful, my friend!
As a musician I can't help but really empathize. I hope you are able to regain all you have lost in good time.

I have to ask you something. It's a shot in the dark, but...have you had a COVID vax anytime recently? People report Bell's Paulsy like symptoms with it. That condition is facial and is very near to the ear canal. I have a coworker who had a combination of symptoms 2yrs ago that affected her ear AND gave her some kind of facial paulsy. And she was told it was probably viral in origin. I'm working with her tomorrow and I'll ask her more about it. Oddly enough, another coworker called me at work today to say he was having Bells Paulsy symptoms after a COVID vax. Interestingly, just an obvious truth...both of these coworkers are black. There is alot of variation in how these viruses and vaccines affect different ethnicities. I dont really know if any of this applies to you. I'm just trying to help on a whim.

I wish you the best, and hopefully you are not affected like this for long.

P.S. I just read your story to my wife who is an RN. Her first speculation was Lyme Disease. And now that I think of it I have read that Lyme can cause hearing loss..

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Last edited by Metal Pig; 04-11-2021 at 11:58 PM.
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  #5  
Old 04-11-2021, 07:38 PM
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as a guy who has hearing loss.. I'm happy they caught things quick and the steroids worked..living with impaired hearing is not only hard in everyday life, but your hobbies as well... wish you the best... hope you have full recovery...

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Old 04-11-2021, 11:42 PM
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Wow, that's rough! Glad to hear there is some recovery happening, and I hope you get at least most of your left side back.
Thanks for posting about the specifics too. This could someday help one of us(or more than one of us).
'grats on the quarter!
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Old 04-12-2021, 05:38 AM
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Thanks for sharing. The information you've given may very well make a huge difference in someone's life. Like many my age and work history I know the difficulties of hearing loss. I hope you recover completely.

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Old 04-12-2021, 04:35 PM
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Originally Posted by KingTotsalot View post
Trips to the ER saved my life in 2012 because I was quickly tested and checked into the hospital due to pain in my right side, which I initially thought was an ulcer flare up, but turned out to be stage 2 cancer...rapid onset. Another trip a few years later to the same ER, led to emergency surgery to blast up a kidney stone (7 mm) stuck in my tube between the kidney and bladder. I mean immediate surgery, and I was back in the Castle the next day. Now I do not fool with the regular doctor, straight to ER for anything i think is serious. So you give good advice, and it is much appreciated! Good luck to you! I wear a HA in each ear and have tintinus, and have found with the HA in, it is much less!
I'm sorry to hear about your major health issues that took you to the ER, but I'm sure glad to hear that you got good, prompt, life-saving treatment! And thanks for the info about the HA...if I do end up needing HA, I'm glad to know it can help minimize the tinnitus effects.

Originally Posted by kaufenanger View post
Get well soon, Ill keep you in my thoughts and prayers.
Thanks so much, Kaufenanger - I truly appreciate that!

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Old 04-12-2021, 04:54 PM
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Originally Posted by Metal Pig View post
Jeez, that is really awful, my friend!
As a musician I can't help but really empathize. I hope you are able to regain all you have lost in good time.

I have to ask you something. It's a shot in the dark, but...have you had a COVID vax anytime recently? People report Bell's Paulsy like symptoms with it. That condition is facial and is very near to the ear canal. I have a coworker who had a combination of symptoms 2yrs ago that affected her ear AND gave her some kind of facial paulsy. And she was told it was probably viral in origin. I'm working with her tomorrow and I'll ask her more about it. Oddly enough, another coworker called me at work today to say he was having Bells Paulsy symptoms after a COVID vax. Interestingly, just an obvious truth...both of these coworkers are black. There is alot of variation in how these viruses and vaccines affect different ethnicities. I dont really know if any of this applies to you. I'm just trying to help on a whim.

I wish you the best, and hopefully you are not affected like this for long.

P.S. I just read your story to my wife who is an RN. Her first speculation was Lyme Disease. And now that I think of it I have read that Lyme can cause hearing loss..
Thanks for the sympathy, Metal Pig, and for you and your wife taking the time to read my story. I'm still getting a little bit better each day! Yes, I did actually receive the first dose of Moderna vaccine on March 13, about 10 days prior to onset. My ENT dismissed the vaccine as a causal factor - in fact, he encouraged me to go ahead and get the second dose when it was due, which I did this past Saturday. The Bell's Palsy connection to the vaccines might be interesting though, as SSNHL and Bell's Palsy seem to have some rough similarities...both are largely idiopathic, but may both stem from viral infections, and their symptoms both seem to resolve along the same time scale (though SSNHL damage often becomes permanent). I'll certainly ask about it again when I see the doc on Thursday.

And interesting that your wife mentioned Lyme. There is actually quite a bit in the SSNHL literature that discusses Lyme disease as a possible causal factor in some cases - there was a study published earlier this year that showed 9 out of the 86 SSNHL patients who participated ended up testing positive for antibodies to the bacteria which causes Lyme. Looks like it might be wise for me to request some lab work for Lyme disease.

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Old 04-12-2021, 05:13 PM
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Originally Posted by Max houser View post
as a guy who has hearing loss.. I'm happy they caught things quick and the steroids worked..living with impaired hearing is not only hard in everyday life, but your hobbies as well... wish you the best... hope you have full recovery...
Thanks so much, Max. I definitely experienced enough during that first week to gain a whole new perspective on the challenges of hearing loss. This entire experience has also brought sharp focus on what's truly important in life and a major appreciation for so many things that regrettably get taken for granted - it's truly life changing, but I've also learned that it's up to me to make it life changing for the better, regardless whether my recovery turns out to be full or partial.

Originally Posted by Foragist View post
Wow, that's rough! Glad to hear there is some recovery happening, and I hope you get at least most of your left side back.
Thanks for posting about the specifics too. This could someday help one of us(or more than one of us).
'grats on the quarter!
Thanks Foragist - me too!! I'm incredibly grateful for the recovery I've had so far, and even more grateful that I continue to gain more each day! Yep, I really felt like it was important to share the story - the more awareness there is out there, the more likely the next person who experiences it will get the prompt care they need! Too many GP doctors and staff are simply unaware of the condition - super common for them to assume it's a standard infection or allergies causing the hearing loss.

Originally Posted by MuddyMo View post
Thanks for sharing. The information you've given may very well make a huge difference in someone's life. Like many my age and work history I know the difficulties of hearing loss. I hope you recover completely.
Thanks MuddyMo, I really appreciate your well wishes! That's the real goal of sharing my story with as many folks as are willing to listen...hopefully it ends up helping someone down the road - and also give them hope that at least partial recovery is possible!

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Oldest silver: 1854 Seated Liberty Quarter
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  #11  
Old 04-12-2021, 06:39 PM
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Originally Posted by AirmetTango View post
Thanks for the sympathy, Metal Pig, and for you and your wife taking the time to read my story. I'm still getting a little bit better each day! Yes, I did actually receive the first dose of Moderna vaccine on March 13, about 10 days prior to onset. My ENT dismissed the vaccine as a causal factor - in fact, he encouraged me to go ahead and get the second dose when it was due, which I did this past Saturday. The Bell's Palsy connection to the vaccines might be interesting though, as SSNHL and Bell's Palsy seem to have some rough similarities...both are largely idiopathic, but may both stem from viral infections, and their symptoms both seem to resolve along the same time scale (though SSNHL damage often becomes permanent). I'll certainly ask about it again when I see the doc on Thursday.

And interesting that your wife mentioned Lyme. There is actually quite a bit in the SSNHL literature that discusses Lyme disease as a possible causal factor in some cases - there was a study published earlier this year that showed 9 out of the 86 SSNHL patients who participated ended up testing positive for antibodies to the bacteria which causes Lyme. Looks like it might be wise for me to request some lab work for Lyme disease.
I regret to say, getting doctors to consider an alternate diagnosis is like pulling donkey teeth. When I was sick last month, 3 doctors could not/would not tell me what was wrong once COVID was ruled out. I got better, but I was left to speculate on my own. I think I suffered from "yeast die-off syndrome" where yeast in your gut leaves behind toxins as it dies off. I had been taking turmeric for joint pain, not realizing it was also very effective at eradicating yeast from the gut. Ultimately that's good, but if it happens too fast you suffer from the result of residual toxicity. Three doctors just poo-pooed my thoughts on that...but could not offer any other ideas other than my "IBS was acting up". More and more I am convinced I was right and they just didnt want to bother with it once I appeared to be getting better. In other words, dont take your doctor's word for it if they will not do adequate testing and listen to details.

Good luck, and happy healing!
I sincerely wish I could offer more.

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Last edited by Metal Pig; 04-12-2021 at 06:54 PM.
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  #12  
Old 04-15-2021, 09:13 PM
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Wowzers thanks for the report and glad you are on the road to recovery! Lots of need to know information in your story!


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