Sudden Hearing Loss: Experiences and Treatment

[beachcomber13]

This original post was from a user named deafbuthopeful. Many thanks for his willingness to share his experience! This was posted in an old thread, so I wanted to separate it out for ease of use.

Hi everyone,

I promised to update all of you regardless of how things turn out, and for me I have seen dramatic improvement, so I hope this gives some of you hope.  I've chronicled my situation, but let me start by saying that I was measured profoundly deaf on Feb 28th with 10% Word Distinction (I could barely guess at 1 word) at 90+db.

2 days ago I was measured using headphones without masking (which is less accurate), and they found I had improved to 35-50db, with the ability to distinguish words at higher volumes.  This is a FANTASTIC improvement and the Otologists were very surprised.

Here is my journey, it is ongoing now, but involves self research plus pursuing every available treatment including oral prednisone, intratympanic dexamethasone, constraint induced music therapy, and hyperbaric oxygen.

Day 1: Woke up with strange hearing in left ear
Day 3: By evening left ear was completely deaf, no tinnitus
Day 4: went to 2 clinics because my family doctor doesn't work on wekends, was given 50mg/prednisone per day after seeking second opinion.
Day 5: Started taking Vitamin E (400IU) and Magnesium (500mg) and Vitamin B100 complex.
Day 6: saw my family doctor, he immediately recognized SSNHL and upped prednisone to 70mg/day plus booked me with an ENT
Day 7: ENT told me there's nothing he can do, and asked me to check back in 6 weeks.  Found new research dated Jan 2014 where good results were achieved using Constraint Induced Sound Therapy.  Started trying this even though I cannot hear the music AT ALL.
Day 9: I found an Otologist, and insisted my Doctor to refer me, the Otologist fit me in for an emergency visit.
Day 10: Saw Otologist, they measured Profound Hearing loss below 1000Hz and 75-85db above 1000Hz.  Was given very grim prognosis (less than a few percent chance of any recovery).  Offered intratympanic injections plus hyperbaric oxygen.  Got my first injection.   That night after firs tinjection I thought I could hear my finger snapping right beside the ear, it sounded distant and like static.
Day 11: started hyperbaric oxygen
Day 12: I think I can hear my electric razer buzzing beside my ear, it is very light and distorted but something is definitely there.
Day 14: 2nd intratympanic injection.  I can defintely hear my electric razer buzzing, and I can hear some sort of something that might sound like voices? I can actually hear the music slightly during my sound therapy sessions.
Day 15: Dr in charge of hyperbaric unit said patients they treat have a 50% chance of 50% improvement, and he thinks me prognosis might be decent because I am responding to intratympanic injections.  At night I can hear my bedsheets from my left ear, they sound distant and mysterious, but there is something there.  This is HUGE.
Day 16: 3rd  and last intratympanic injection.  Quick Audiogram screen shows improvement to 40-55db with 85% word distinction at higher volumes.

This brings me to today.  Every day I have been taking Vitamin E, Mg, B100 complex, and eating lots of healthy vegetables and foods strong in Folates, B vitamins etc (daily diet consists of boiled eggs, turkey, lots of raw carrots, 1/4 avocado, spinach, kale, plus a vegetable smoothie using grapes, orange, celery, kale, and mixed greens).  The idea is B vitamins, folate, and Mg help convert homocystein.  Vitamin E shows in some studies to have a marginal effect.  I avoided using Zinc because some dieticians theorise it might interfere with steroids (it boosts immunity, which is counter to how steroids act to lower inflammation).  I also took the constraint induced sound therapy quite seriously, as the study is very recent and the ideas are sound (the idea is that the brain starts to remap itself to use the good ear), plus also modest sound stimulates the hair cells and might induce more healing.

My personal belief is the combination of all these therapies helped each other out.  I'm not out of the woods yet, but right now I can hear from  my left ear eve nthough its not clear.  There's still that feeling of fullness, voices sound robotic (less each day), and there's still light tinnitus.  I'd rate the tinnitus at 2-4 out of 10, while 8 days ago it was definitely 8/10.  I have no more intratympanic steroid injections schduled and my prednisone is tapering now, but I will continue music therapy with HBO.  

The music therapy is just done at home on headphones, and I listen at BELOW loud levels, even when my ears couldn't hear it, I believed the sound was stimulating the nerve.  The music sounds distorted and not great, and quite dead and empty compared to my good ear, but at least I can tell it is music.  I'd say it sounds 65-75% as good as my right ear.  Here is the study on this type of treatment:  http://www.nature.com/srep/2014/140129/srep03927/full/srep03927.html

I will report back again in a week or so, and I will continue to take detailed notes.  I wish I could get to within 10db of my good ear so I could have true binaural hearing, but this improvement has already been a really blessing.  Good luck to everyone and I hope these notes help.

I should add that I was not responding to the prednisone almost at all from Day 1-9, so I was desperate when I was on day 10 seeing the Otologist.  I am 100% sure based on my detailed notes that vast majority of the improvement occurred starting the day of the injections and/or HBO treatment, because each day got better and better. But once I hit a certain point the improvements slowed down.

[Bill4946]

I want to thank beachcomber and all who posted here.  I was diagnosed with. sshl in April after I lost all hearing left ear.  Went to ER because I had vertigo and nausea.  ER doc recommended ENT.  Luckily, I was able to in to the ENT within one day and was put on prednisone immediately.  My first audio gram was really bad - 90dbls at all frequencies and no word clarity.  Two weeks later, the lower frequencies were to to 40 dbls, mid frequencies were 50-60 dbls and the high frequencies were still at 90 dbls.  Word clarity still bad.

The reason I am thankful for the posts here is because they offer alternative treatments.  Like most, I am frustrated with the lack of knowledge in this area.  I am trying the constraint induced therapy.  It seems to be helping.  I am also going to the Mayo Clinic this week to see if they know anything.  Again, thank you for the posts here.

[deafbuthopeful]

Hello all, I am the original poster of the above post.  Thanks to beachcomber13 who graciously recreated the post here.

I never went back to the old thread (http://www.medhelp.org/posts/Hearing-Loss/SSHL-recovery-timeframe/show/1478159?camp=watch_list) because I thought it was intended not to be replied to.

I wanted to share my current status, but first I wanted to thank Dutchman49 for sharing his detailed journey.

My journey may be ongoing, but for all medical intents and purposes, doctors consider my hearing fully recovered.  I have been incredibly lucky and regained full functional hearing and true binaural hearing (which requires the two ears to be within 15db of one another, if I understand correctly).

On May 1st (2 weeks ago) I went to see my Otologist for what would probably be the last followup visit.  I was measured before that visit with a simple audiogram, which found my hearing had returned to baseline (same as right ear) in the 250Hz to 1000Hz range, and I was at 15dB on the 2000Hz-8000Hz range.  Simple speech distinction was 100%.  The doctor considered me fully recovered and I am incredibly grateful that I have reached this recovery.   However, from a quality perspective, my left ear is inferior to my right.  Pitches sound different and music sounds quite different, but from a volume perspective, the two are very close and I have no trouble with day to day hearing.  The Otologist attributed the quality difference to the the differences in hearing threshold.  I'm not going to complain, I feel grateful and very lucky.

I just want to tell everyone that I have stopped taking the vitamins, while they are sold in any available pharmacy, vitamin pills are generally pretty high doses that I don't consider safe for long term consumption.  Instead, I continue to make healthy vegetable drinks and eat healthy foods.  If all this theory is true about how this type of thing can happen, then I strongly believe I need to maintain healthier diet to ensure the health of my hearing.    I have continued my Constraint Induced Sound Therapy in the hopes it may improve the quality of hearing and will continue to do so for another 5-6 months.

I have a MRI scheduled in a few months to rule out the neuroma.  Once that hurdle is cleared my doctor advises I put this behind me and live a full and normal life.  I intend to do that, but this is not something you put behind you easily, and my heart goes out to everyone who is experiencing this or who will experience this.

For those of you just finding these posts, please know that like many others, I went through periods of fear, depression, and self loathing and regret. I wished I acted sooner and took this more seriously.  I wished I pushed my doctor to let me see the Otologist sooner rather than seeing that other ENT who ultimately wasn't doing a thing to help me.

Aside from family and friends, your health is the most important and precious thing you have.  I urge all of you to take your own steps and don't let doctors brush you off.

The first doctor I saw on Day 4 told me it was nothing and to coe back in 2 weeks.  I didn't believe her and sought a second opinion.  The first ENT I saw told me there was no treatment outside of prednisone and told me to check back in 6 weeks.  My own family doctor refused to refer me to another ENT to get a second opinion.  I almost backed down, and would not have gotten my injections or HBO as a result.  Instead, wracked by fear and self loathing for not doing something sooner, I resolved to push the issue with my doctor.  I did everything until my doctor agreed to send me to that second, critical opinion.

The improvements I experienced took a turning point the same day I saw this Otologist, so let me emphasize what others have said in other posts:

- find an Otologist, not just a ENT.
- ask, or insist for intratympanic injections, not just oral steroids.
- ask about the option of HBO.  It is recognized by the Udersea and Hyperbaric Medical Society as being a treatment for SSNHL, and the governments of Canada, US and probably other countries recognize this.
- try the healthy eating and vitamins, but make sure the doses are safe.  The Otologist told me not to waste money on these, but what is $100 of vitamins next to a lifetime of regret for not trying everything in your power?

Best of luck to everyone. I hope to check back later to report on my Neuroma MRI results, but if I don't check back I hope everyone has the best results and best care they can get. This is a scary journey and I will never forget it, or those others who suffer from this disease.

[Dutchman49]

My facts and figures:

First audiogram (day 1); Right ear normal, left ear 80-90 dB in lower and higher frequencies nothing in de middle frequencies. Speech audiogram 0%. Completely out of hearing on the left.

My journey;  
Day 1; diagnosed with HSSL started prednisone in the evening
Day 2; No hearing at all, heavy tinnitus and sense of soft knocking sounds which my ENT told me is nothing just the brain getting used to the new situation
Day 3; Called another ENT specialist, confirms what I already know, not much else I can do I think. I can hear scratches (like a sharp knife on glass) in case of high pitched screams.
Day 4; I start the CIST, I hear same scratches in the rhythm/beat of the music.
Day 5; I can follow the song, still unable to guess which song it is from one of my favorite albums but once I know I recognize the beat and able to follow. It sounds like a low volume, really poorly tuned radio station
Day 6; I am able to understand the song text when I put the volume quite high. It comes across as very flat monotone sound.
Day 7: I can understand the text also at more normal volume, still monotone

Second audiogram (day 7); lower frequencies greatly improved back to 30dB, high frequency still at 80dB, speech audiogram is 100% at 60dB drops to 10% at 40dB. I speak to two ENT specialist at the hospital who are very pleased (so am I!) They suggest to add 4 days to the prednisone “blast and taper” treatment. As I am already in the taper we add 4 days to the day 7 tapered level of 40mg per day. (see below) We also schedule a next audiogram on day 21 and will also do an MRI.

Day 8-12; I believe I have further improved the last few days but can’t tell for sure. Progress has certainly slowed down.

That brings me to today; the felling of “pressure” is somewhat reduced so is the tinnitus. The quality of sound, when listening to music, is still very poor although I can hear more different tones the music is still very flat and without higher notes. I clearly have my “direction of sound” back.

Prednisone; since some people asked about the prednisone treatment, this is the routine I am on:
5 days of 60mg/day, 1 day of 50mg, 5 days of 40mg/day, 1 day of 30mg, 1 day of 20mg, 1 day of 10mg. As I explained above the treatment was extended with 4 days at day 7 that’s why the unusual taper down. I had to take half the daily amount at breakfast and the other half at dinner. I had no side effects other than being more emotional (I just blame the pills!). I took them with a cup of yoghurt before meals to help my stomach.
Vitamins; vitamin B100 complex, vitamin E and magnesium 400mg per day
Food; Daily smoothie made of Oranges, Avocado, Kale, sometimes including spinach and grapes. I snacked about 400gr of raw carrots daily. Naturally I kept a low fat diet with little red meat. Turkey sandwich at lunch.

CIST & music; I started day 4. I used my iPod with “in ear” headphone for the bad ear and plugged my good ear with a standard soft comfort travel earplug. I don’t think you should use plugs for hearing protection as they are designed to protect you but still allow you to hear. Fist couple of days I still used on top a standard power tool hearing protection headset to cover both ears (one with the headphone and one with plug) as I was still hearing too much background noise with the good ear and still not much with the bad ear. I listened to all my old favorite music so that at least I knew well how it was supposed to sound. Supertramp, Fleetwood Mac, The Eagles, Sting, I tried lot’s of variety and also threw in some classical at times. In the article the test group had the ability to adjust the sound by using an equalizer behind a computer. My little iPod didn’t have that feature but it helped me to walk around the house and do simple things like cleaning up while listening to the music.

Book; I read “The hundred-year-old man who climbed out the window and disappeared” from Jonas Jonasson. Crazy story will make you smile.

Let me end by thanking you all again for your good comments advice and support. I am not there yet but a week ago I felt extremely miserable and I feel a lot better now. I have done I think what I could and part of what happened in this SSHL episode is probably what I have to learn to live with. That said I also learned there are so many differences between cases that it is impossible to predict what the outcome will be over the long term so I keep my hopes up. The same goes for what will work for you. There are things you can do and I think you should try to walk multiple paths to possible recovery to have the best chances. Best of luck and many thanks again.

[Dutchman49]

Dear all,
I feel a bit of a need and duty to add my story to this forum mostly for two reasons. First of all to say a very big THANK YOU to everyone contributing, sharing their experiences and who have by doing so have helped me and secondly, as there is so much unknown about SSHL, for me to also provide a story, and list my facts, in the belief it helps others towards hope and maybe partial recovery.

I will give you first my story so you have a bit of context and then as much as possible facts and figures (as I think these can probably help you the most)

My story
I (male, 49) lost hearing in my left ear on Tuesday April 21, 2014, now 12 days ago, after Easter weekend. It happened during the course of the afternoon; I had some meetings at work, was maybe struggling around 3pm with “feeling of fullness on the left” and noticed that I was unable to use the phone on my left ear at 5pm. In the evening I lost hearing in my left ear completely. Like many of us I didn’t really think much of it just some cold or something. I called our family doctor first thing in the morning. I had to push the assistant on the phone a bit to get an appointment the same day (I got the “why don’t you try some droplets first and we will clean it out in 3 days”).  I saw our family doctor at 2:30pm. Although I thought it was strange not to hear anything, I had no idea what was coming, just though I had some blockage somewhere. She performed the Weber and Rinne test using the tuning fork (I had no clue what she was trying to do at the time, it is explained in detail in the NEJM article, see below) and called ENT in the local hospital right away. I was there one hour later and after an audiogram I was diagnosed with SSHL. Like most of us experience, they weren’t able to tell me much. They took series of blood samples and put me on prednisone right away which is 24 hours after SSHL incidence. Next appointment in one week.

That evening and the next morning I read a ton of stuff off the internet and had exactly the same anxiety I read from so many other people going through this. The shear frustration of not knowing what the cause is, the totally unknown prognoses they give you and the uncertainties about treatment options.

The first learnings of what I read were not positive at all. The grim outlook, lack of recovery, all pretty random it seems, and then I was worried about any other potential complications I did (and still do) not know about. Given the fact that I lost pretty much all hearing in my left ear I felt terribly down. I am sure the prednisone (with depression as one of the side effects) did not help either!

But then I also read some of the more positive notes, read about additional things people did and I wanted to do things to improve my chances. I first read all the medical stuff I could find (patient info in The Netherlands, Belgium, USA, UK, scientific papers, several presentations and of course patient forums. I would say that I learned the most from the following three papers and I would recommend reading them:

1 New England Journal of Medicine, Idiopathic Sudden Sensorineural Hearing Loss, Steven Rauch 2008

2 The Lancet, Seminar Sudden Sensorineural Hearing Loss, Benjamin Schreiber, April 2010

3 Nature, Scientific Reports, Constraint Induced Sound Therapy for sudden sensorineural hearing loss behavior and neurophysiological outcomes, Okamoto and others, Accepted Jan 2014

It took a bit of searching to get a full version of the first two but they are out there. From all the sources reviewed I learned that indeed there is so little known about SSHL and there are no common answers valid for everyone. I called another ENT specialist to get a 2nd opinion and especially to discuss Hyperbaric Oxygen and Intratympanic steroids injections which seemed to be the treatment options I read about that seemed to help certain people but didn’t seem to be widely supported by the medical community. I ran a dead end on both of them. The injections are not done in The Netherlands and the hyperbaric chamber is not used for SSHL cases either I was told by 2 separate ENT doctors. Mind you, our healthcare system works a bit different. The bad thing is as we are all equally insured you kind of get the standard protocol treatment (unless you insist and pay for what is called “experimental treatment” yourself), the good thing is that doctors have no personal business interest to sell you something and tell you all kinds of stories. So I started to look for other things to help improve my chances.

I found this Medhelp forum with topics about the vitamins and bought them; I took the list of healthy food items and went for it, the vegetable smoothies with oranges, kale etc.  I started to eat nearly a pound of carrots a day and so on. I figured that I needed to take my rest to support any healing so I have stayed home from work, slept 8-10 hours each day and took afternoon naps. Then I read about the Constaint Induced Sound Therapy (CIST) on this forum, I read the Nature article (listed above) on day 3 so I started CIST on day 4, more details below. Then I whatsapp’d my friends what had happened and that I was feeling miserable and they all called, some dropped by and gave me great support. Lastly I just read a book (while listening to music) which was on the lighter side, maybe even silly and it made me feel better which I figured helped also.

One thing I experienced and did not read too much about is the relief that I felt the first week from using a comfort earplug in my good ear. The “fullness” disappears, the impact of all background noise is reduced which I felt was overwhelming, especially when I needed to go outside or to a supermarket.

I will put the facts and figures in a next post.

[lamasheen5]

how did this work out after Day 16 and the prednisone tapered off? Did stopping the prednisone cause any relapse?

[beachcomber13]

I am starting a new thread will your question, because it is a great one but will likely be missed in this thread. I will respond in the new thread. :)

[joshuaturbeville]

As we age, are we really gonna have this hearing loss experience? What is the main reason or cause of this? And how can we prevent it? Thanks.