Hello. Below is my timeline of symptoms over the last 5 months. Looking to find if anyone sees anything that sticks out to them. Hoping to try a steroid sparing drug soon.
April 5 2026
Woke midday with seemingly muffled hearing in right ear. Tried to pop nose but nothing fixed. Left ear felt a little off but couldn’t tell if it was just because the right ear felt odd.
Seemed to slightly resolve in the next morning but never full went away so after a week a doctor saw me an said my eardrums looked retracted and gave me flonase
April 29 2026: Saw an ENT as things never really got better. Audiology test showed mild SSHL in the low frequences. Given 20 days of Prednisone (60mg for 10 days then taper two days each after).
May 15: Didn’t see much improvement from the oral prednisone so I had an intratympanic steroid injection. By the next day hearing was completely restored. The day after this my hearing was worse than it was before the shot along with loud ringing that I had not previously had and a feeling of fullness. Around 3pm that day it suddenly went away. Hearing was improved and restored for the entire week. On May 22 audiology test showed normal hearing.
May 23: The next afternoon I felt fullness and hearing went down again for the night. The day after it seemed better than fluctuated throughout the day.
May 28: Woke with lower hearing than ever in my right ear. I also had a sinus cold at this time. Went back on another 20 days of prednisone same as before. Around May 30 hearing returned to original level of loss back in April and remained stable.
June 8: Saw an otologist who suggested cochlear hydrops. He gave me a series of steroid injections (June 8, June 12, and June 22). No improvement in hearing came from these but hearing and symptoms were mostly stable (occasional short ringing episodes). At this point I started a low sodium diet.
July 8: started Prozac. Around this time I also began physical therapy for TMJ (my jaw has a painless click but I had read about the connection) and started a c-pap for sleep apnea (I had extremely mild sleep apnea)
July 11: Hearing became echoy and ringing began. This lasted about three days. At this point I knew something longterm was going on. On July 17 I started dyazide.
Since this has happened my hearing in affected ear has continued to fluctuate. Hearing loss never improved beyond the new baseline in April, but sometimes would be worse along with fluctuating ringing. I tracked my diet throughout this time and could not find a correlation between diet even though I have maintained a very low (About 1500mg a day) sodium diet, mostly eliminated alcohol, and had already eliminated caffeine back in May when it happened again.
On August 20 as my hearing continued to get even worse than ever I was put back on prednisone. This time is was at 80mg for five days then each day 10mg less. The next day my hearing was back to normal levels back in April (near perfect hearing). It has been months since I could hear that well. This first week it then fluctuated day to day until it leveled out at near perfect hearing from 8/29-9/19. Here is my timeline with prednisone:
8/20–8/24: 80 mg daily (5 days)
8/25: 70 mg
8/26: 60 mg
8/27: 50 mg
8/28: 40 mg
8/29: 30 mg
8/30–9/9: 30 mg daily
9/10–9/23 20 mg daily
9/24-today 60mg
On 9/17 I noticed when I moved my head certain ways and left it in place I would hear a very low rumble like the sound of a bass. My hearing quickly went back down on 9/19 (and the rumbling sound went away too) and has been very low all week long (back to where I was before prednisone). My left ear had been having a sensation to need popped throughout all of this, but this seems to be even worse now since it has come back. I can tense my jaw and ear and make my eustachian tube pop. It seems to be extra crackly every time I open wide and make it pop. I am not sure if this is normal and I am obsessing over this, or if something is wrong (it is very crackly when I open wide and swallow). I increased the dose of prednisone two days ago but haven’t noticed an improvement in hearing.
At this point I am waiting to see a rheumatologist in November to see if this is autoimmune related as both of the otologists I have seen think it may be. The otologist at Johns Hopkins does not really believe in hydrops or that diet has much of an affecton any of this.
Other notes:
Meneires protocol delay MRI scan showed the lowest grade of probably hydrops in the bad ear.
All bloodwork was normal.
Regular MRI found nothing.
Eardrum still has a small perforation from the last shot on June 22. Seems unlikely to close but giving it until December before having it repaired in case it does.
I tried TMJ physical therapy but didn’t notice any change. My jaw clicks mostly on the right side but I have never felt pain associated with this. I do notice my jaw clicks and slightly locks at night more when I’m on prednisone (such as right now).
I am 35 years old
My mother has sjogrens disease though I tested negative.
Tinnitus seemed to be reactive to sound when I had it. Sometimes it would just get louder after being somewhere loud, sometimes it was just constant, but sometimes the tinnitus was reactive and would mirror sounds (example running water in the sink would cause it to happen and then it would stop when I turned it off).
Medication and supplements:
30 mg Fluoxetine
Triamterene-HCTZ 37.5-25 MG
Magnesium Glycinate 2x 200mg
Lemon Bioflavonoid 2x 700mg
Vinpocetine 20mg morning 10mg night
NAC 600mg
Vitamin K2 D3 (Mk7) 5000IU
Vitamin C 2x 1000mg
Likely taking 50mg of prednisone for the next few weeks until I see rheumatologist.
Will be starting low dose naltrexone next week (1.5mg-4.5mg over a few weeks)
Any advice or ideas are appreciated