Bilateral Sensorineural Hearing Loss — Documenation Thread

Hi all! I decided to start this thread in order to document cases of bilateral sudden sensorineural hearing loss (BSSHL). Some in the medical community classify BSSHL as a completely different disease than its unilateral counterpart.

I was recently struck with BSSHL, and no one has been able to answer why this occurred. More disappointing is that not one physician is showing any concern and investigating my case any further. Furthermore, there seems to be no interest in documenting my case.

With that being said, I created this thread so that these cases can be documented. As many of you know, we have to be our own advocates.

My intent with this thread is to see if we can extract any commonalities or patterns between the various cases.

I want to thank everyone in advance for their participation. My prayers are with all those dealing with hearing loss and / or tinnitus.

Here are some things to consider adding to your documented case:

• Please provide as much detail as you feel relevant
• Any recent exposure to medicines / chemicals?
• Audiogram details? How many db loss at which frequencies?
  
• Family history of hearing loss?
• Any other symptoms?
• Eustachian tube involvement?
• Any events prior to the loss?

I have posted my case on this website, but I will re-post it here in this thread shortly. Thanks.

 

Here is my case:
- 7 month prior - My wife and I bought a fixer upper house. This was the beginning of EXTREME STRESS!!! I was freaking out over every little thing that was wrong with the house. Managing this project with all the contractors really took a toll on me.
- 5 months prior - I believe that the house renovation stressed me out to the point I started exhibiting physical symptoms. On my left side I started to get chest, side, and back pain.
- 2 months prior - Went to primary doctor regarding my symptoms. Blood work good (aside for vitamin D low and report indicated that I should watch my cholesterol). Chest X-Ray good. Lyme disease test negative. EKG good. 1 week later I went in for a stress test and results were good. 1 week after that I went in for an upper endoscopy since I had a history of Eosinophilic Esophagitis (EoE) and stricture. Endoscopy was good... I was surprised when the doctor said that I did not have EoE or a stricture. I just had a small ring. He told me to take Prilosec every day and to follow up in a few months.
- 1 month prior - I was extremely stressed out and anxious googling my symptoms and poking around my body one night. I noticed a had bilateral ringing in my ears. It seemed to subside the next morning.
- 2 weeks prior - I got a cold sore
- 10 days prior - I went to a sports medicine doctor. I had some slight calcification on one of my ribs probably as a result of an injury the previous year. X-Ray was clean. I was told to do some stretches and was given Diclofenac Sodium (Voltaren) 1% topical to be applied to my chest 4 times per day.
- 3 days prior - Had a panic attack regarding my symptoms and went to the ER. They did a CT scan and it was clean. I felt a huge sense of relief.
- 2 days prior - Sprayed my lawn with weed killer (2,4D, Dicamba, and 90% inert ingredients). The sprayer did not dilute the formula correctly and the formula was way too strong. After about a 15 minute exposure, I had a burning in my throat and nose. I showered twice. Burning went away prior to me going to bed. No other symptoms.
- 1 day prior - I bought a yoga noodle and performed some stretches I found online. One the stretches involved laying on my back on the noodle, tucking in my chin tightly to my chest, and stretches my arms back.
- THE DAY - I woke up with a slight ringing in my right ear with the feeling there was something stuck in it. I used a Q-tip but it really didn't do much. This was the first day of 2 months of sleeplessness.
- the same week - Ringing got worse and started in the other ear also. My eustachian tubes and middle ears felt inflamed. I had a constant crackling sound when swallowing and sometimes talking. I went to an immediate care clinic thinking infection. Doctor said my ears were clean. He asked me about any events that may have occurred. I told him about weed killer and he mentioned ototoxicity. He said I should see an ENT.
- 10 days after - Went to ENT. Audiogram showed -30/35 db loss in left ear at 3K and 4K. Right ear was normal even with a -25 db drop at 8K. Other frequencies were good in both ears. I had 100% and 96% word recognition. I told him about the weed killer and Voltaren. He did not believe either was the culprit. He suggested a virus that could be blocking the nerve / blood supply to the ear. I was given a prescription for prednisone.
- during 12 days of prednisone - I felt like things were opening up. I am not sure if it was my actual hearing that was coming back or if the prednisone was having a positive impact on my eustachian tube. My heart raced during this period. Not sure if it was anxiety, the steriods, or both. Because of my mental state, my wife brought me to the ER. A basic blood test was done. I was given Valium and a list of psychiatrists. I was discharged. I was given a prescription for Zoloft which I started taking. I have always had a slight tremor, but during this period it got worse. I also developed myoclonic jerks on my hands, legs, neck, etc. I accidentally dropped my 2 last doses of prednisone down the drain. I called the doctor and he said it was ok. In all, I did 10 days of prednisone including the taper. To be honest, I felt pretty good. I stopped Zoloft and I felt like I had a handle on things. I started taking supplements such as NAC, vitamins C & E, magnesium, etc
- About 24 days after onset - 2 days after I stopped the prednisone and zoloft, the T got worse. It rang in both ears and I heard it in my head. Around this time I had an MRI with the inner ear canal. It came out clean.
- About 1 month after onset - I went to the ENT for a follow up audiogram. My hearing got worse in my right ear. At this point ears were almost symmetric in hearing loss (both with -30/35 db drop in 3K and 4K). Aside for the -25 db notch at 8K in my right ear, my ears were symmetric. I was told there was nothing more to do and I was asked to return in 3 months for another hearing test.
- Over the next 6 weeks - I went to 3 other ENTs during this period. In summary: ENT #1: "I never heard of weed killer causing this. Just ignore the ringing and enjoy life." I asked him about my eustachian tube symptoms and he said "the two are not connected". Not sure what he meant. ENT #2: take flownase and come back for ABR. Since I already had an MRI, I did not opt for ABR. ENT #3 (TOP EAR SPECIALIST IN CHICAGO AREA) : I brought my charts and a write up of my symptons. He starts off with "um, why are you even here?!?!?!!?". Looks in my ears. Looks at my charts. Since my mom had hearing loss he said it was hereditary. I asked him about the rapid onset, and he admitted it was a bit unusual for hereditary. He was in a hurry and tried making his great escape. I asked him about the weed killer. His response, "IMPOSSIBLE!!" He stated that there is a barrier between the middle and inner ear. I asked about chemical absorption into the oval / round window. He was not impressed with my theory. I asked about chemical absorption into the blood stream. He replied that the blood supply to the inner ears is as small as the head of a pen.... once again "IMPOSSIBLE". Off he went.
- Just under 3 months from onset - Got the green light from insurance for HBOT. I did 20 sessions at 2.5 ATA for 1.5 hours per day. After third session T dropped. The relief was only temporary. After treatment there was about a 10% decrease in my T.
- About 4.5 months after onset - I had wet cupping performed on me. Also, tested the water in my house. Came back clean.

Since my hearing loss was bilateral, fairly rapid, and my eustachian tubes have been impacted, I can't find anything on the internet that matches my symptoms. My tremors have decreased a bit but I still get muscle jerks.

Possible causes:

• Extreme stress
• AutoImmune / Systematic
• Prilosec
• Cold sore / herpes
• Diclofenac Sodium
• Weed killer
• Virus
• Hereditary
• Combination of the above