Complicated

I’ve read posts from this board in the past and learned a bit – thanks to everyone who has posted. Decided it’s time to join.

My situation is complicated by the fact that I had a stapedectomy in 2011 (Dr. Brackman at House Ear in Los Angeles), for at the time, the diagnosis was otosclerosis. While an audiogram revealed a mild low frequency hearing loss, and the surgery corrected it, it also left me with a high frequency loss due to laser burn (and high frequency tinnitus). Immediately after the surgery I experienced significant hyperacusis during the healing stage; apparently, not unexpected. After the healing, all was good until 2013 when I began to experience a distinct change in my hearing, increased tinnitus, ear fullness, sound distortion, and sensitivity to sound – almost like it was being turned on and off; no vertigo or dizziness. While my thought was the prosthesis had failed/shifted, the diagnosis at that time was cochlear hydrops. There were about three instances of this over the course of a few months (high job stress at the time). At this time I started on John of Ohio’s regimen and all was normal for over a year. In 2015, following travel that involved a 17 hr. flight (following a URI) the ear changed again with distorted sounds, ear fullness, decreased hearing and ear pain (job stress increases). I attempted betahistine at this time, but due to an immediate migraine, I didn’t continue. The ear changes didn’t resolve this time. In June 2016, I started on diuretics, and retried betahistine; I was able to tolerate it this time.

In October 2016 I experienced extreme dizziness after swimming (my general physician changed my diuretics – I decided to discontinue use.) I had never been diagnosed with Meniere’s since I hadn’t experience vertigo. Since 2013, while my ear had been fluctuating, the diagnosis had been hydrops. The recent dizziness I had attributed to the diuretics since it occurred immediately after my M.D. erroneously doubled my dosage (my fault, too, for not paying closer attention to that).

December 2016 I decided to see Dr. Derebery at House Ear for another opinion of what is going on (after hearing good things about her from this board). After looking at my audiogram with an air/bone gap (better hearing through bone conduction than air conduction through the middle ear), she immediately stated that she didn’t think that it was Meniere’s, but that the prosthesis may have slipped/failed. That had always been my thought since my ear first “changed” in 2013, since the symptoms were so similar to what I had experienced immediately following the surgery. Discussion ensued regarding surgical revision of the prosthesis (she does not do this surgery, so she referred me back to Dr. Brackman or offered to refer me to another Dr.). I saw Dr. Brackman THAT SAME DAY. What was most interesting was that they got different results from the same Weber test (my perception of which ear the sound is louder which may reveal air vs bone hearing). The different results were due to different administration of the test – Dr. Derebery hit the tuning forks very lightly, Dr. Brackman very hard. While this test is not as accurate because it is somewhat subjective, the different results were clearly due to different administration and influenced the diagnostic impression. So that day, I left with the impression from Dr. Derebery that my problems may be due to prosthesis failure; Dr. Brackman stood firm that it was sensorineural in nature. (“Let’s check it in 4 months, eventually it will reveal itself.”)

March 2017, while traveling out of the country, I experienced two vertigo attacks. (For the record, I had experienced vertigo many years ago, but probably due to displaced crystals as the repositioning maneuver resolved it.) First attack was immediately following a 6-hour flight while experiencing a head cold with difficulty clearing ears. The second was a couple days later on a bus tour through a windy mountainous region with elevation changes (both lasting about 3-4 hours with severe vomiting). After the second attack, I completely lost all hearing in my right ear. By this time, I was getting very nervous about the return trip home. Fortunately, after making a few changes to the itinerary, and using all meds possible, I traveled back without another attack. Upon return to the U.S., I immediately saw my doctor and began oral steroids and injections. I experienced one vertigo attack the morning following the first injections; none since then. Unfortunately, very little hearing has recovered, and what is there is essentially useless because it is so distorted.

Since March, I have been learning to navigate my new life, trying to determine what I can and cannot do. While I have had tinnitus, moderate hearing loss in my right ear, as well as hyperacusis for the past few years when this started, it has been taken to the next level. I currently have essentially no hearing in my right ear, extreme hyperacusis and tinnitus; sound lateralization is gone. I have to wear ear plugs OFTEN just to tolerate the world… loud (even moderate) voices, restaurants, social gatherings, etc. Although there is no hearing, the sound vibrations wreak havoc with my ear and cause other problems. I am still working and hope to continue, but it can be challenging. Air travel has been put on hold indefinitely. Not sure if that is a possibility in the future. Travel by car is possible as a driver or passenger with care attending to watching the road. I am on a low-salt diet; take diuretics, betahistine, famvil, JOH regimen - not sure if any of it helps, although I am not experiencing vertigo. I am careful of my movements, not assuming that I may not become dizzy at any time. I am able to continue swimming (now with a center, swimmer’s snorkel vs. bilateral breathing and flip turns). I am able to bike ride and hike. I just take life one day at a time, not knowing what to expect.

At my most recent visit with Dr. Derebery a couple of weeks ago, she suggested the use of a hearing aid FOR THE PURPOSE of helping to reduce the hyperacusis by retraining the brain to tolerate sound. She stated that there is new thinking/research to indicate this may help. Has anyone had any experience with this?? I’m not exactly excited about this… if I’m not able to tolerate normal sounds, how could I possible tolerate increased loudness! Thanks for reading this!

Barbara

 

Thank you to everyone who replied. I haven't visited the hyperacusis websites in the past. Hopefully, I can glean some information there. PeaseNoDizzy - your response gave me a little hope. It's good to hear you have had a good result from the hearing aid. I may consider it (still reluctant, but anything is worth consideration). I have been on such a downward spiral these past few years, that it's good to hear that things may possibly improve. I am so very grateful that the vertigo I experienced in March does not seem to be a regular thing. For those of you who deal with that, that has got to be the worst! Still not sure that it won't return at any time.

Thanks again for all the posts! Just hearing about everyone's experiences and what they are doing about it is very informative and helpful! And of course, I don't feel so alone with the misery. Best to everyone!!

Barbara