Sudden Hearing Loss: Want to connect with others

Most sensorineural hearing loss is gradual loss over years. While sudden sensorineural hearing loss (SSHL) is not common, it does happen. (Obviously) Because of my involvement in HLAA, I know several people who have experienced SSHL A couple of them had it happen after traveling via air. Another was related to a prescription drug. Extreme noise, such as in an explosion may also lead to SSHL. In all instances it was a shocking surprise to go from hearing to partly deaf.

Steroid treatment may work in some cases, but for the most part that treatment has to be started within a few days of the start of the SSHL. It's illogical for someone to know this in advance. We tend to wait a week or so in most instances of health concerns.

There is a sad reality here. While our PCPs are are go to people for just about everything, they do not have training in this area. Hearing isses fall on the 'way back burner' in the studies our PCPs participate in. This is changing, but it's not changing fast enough.

I ask this question. How many people who have hearing issues, even mention hearing loss to their PCP at a standard physical exam? How many PCPs ask their patients about their hearing? This rarely comes up unless there's an extreme problem related to pain such as in an ear infection.

This isn't to say our PCPs are lacking. they just don't know. It is a field few have had opportunity to study in. And, it doesn't help that so many people won't talk about hearing loss or even acknowledge that they have it. Denial is far more common than the reverse. So discussion on this topic is often avoided.

The best advice for anyone with SSHL is to get into an ENT specialist immediately. Of course that's not easy either because they are booked solid. YOU have to recognize this as an emergency and be extremely assertive when trying to schedule an appointment.

All of the people I know who have experienced SSHL have had successful cochlear implants.

Have your PCPs, audiologists, etc. discussed cochlear implants with you?

I was on a airplane ride/ descending to land. Both ears started hurting and popping badly. After landing both ears stayed muffled for about 3 days. The left ear went. back to normal. Right ear got worse. Went to an ENT doctor. He said no wax or fluid buildup in ears. Did an audio test- left ear normal-right ear profound deafness. Went for an MRI- came back normal. The doctors had no explanation except I must have caught a virus that damaged my inner ear.
Have any of you experienced this or know someone that has? What did they do for help? Did they get any answers? I hear sounds in my right ear- almost like waves. Very scary and need to find someone or somebody with this experience to see what they did or what worked for them. The docs just said- sometimes things just happen but I’m not ready to just accept this until I have explored more options or talk to others with the same experience. Please help.

Sorry about you hearing loss.
Ear Nose and Throat Specialists can specialize further in specific areas (I have an ENT who is neurotologist). So, you may learn more by finding someone with specialized knowledge of your condition.
A close friend also lost hearing in one ear due to a virus. She has specialized hearing aids now.

I do know a couple of people who have had this happen after flying. Both of them now have cochlear implants as that hearing did not return.

When I fly, I always take antihistimine before boarding and chew gum during the flight. I often had a 'full ear sensation' along with popping when flying. My ENT told me to do that.

I have had progressive sensorineural hearing loss for decades so this was done as a precaution.

I've fortunately never had this happen to me after a flight, but I have heard that it does occasionally happen, though it's not widely known by the public. It has something to do with the change in air pressure and its effect on the fluid in the inner ear. This may be why some who are vulnerable to ear damage may be advised to use antihistamines while flying, because they tend to dry up the fluids in the head.

I'm surprised the doctor hadn't known about this, and the virus story seems a really ridiculous cover for their ignorance. Please, find another practitioner. Look for help at a medical facility doing medical research, in your area, perhaps at a university, where there will be more specialists. Or a place like the Mayo Clinic.

I hope you are successful in finding relief. So very sorry this is happening to you.

Barbie I am so sorry this happened to you. I am going thru something similar so know how scary and frustrating it is. On Feb 8 I was sitting in my car in the parking lot of my dentist office when I suddenly went deaf in my left ear. I asked the dentist if it could be related to my teeth cleaning and was told no. I went home and hoped it would pass. Few days later I went to an Urgent Care as my Primary Dr didn't have any openings for a few weeks. Dr @ Urgent Care said likely allergy related tho I've never really had allergies like that. Put me on a 1-week low dose taper pack of Prednisone. And told me to use Flonase allergy spray. No change. I'll try to shorten this. Finally got into ENT at 3 week mark. (2 wks is really the max for starting effect treatment in most cases) and started high dose prednisone followed by 2 wks of steroid injections thru eardrum. No improvement. Had excellent hearing in both ears prior. Now deaf in left ear. No speech discernment at all. Dr said it was likely from the C Vax or the sonic tool at dentist office as both have shown rare cases of SSHL. He just told me to come back in 6 mths for recheck. Felt very dismissive. Have now gone to highly rated Audiology group who did much more extensive testing. Am looking into a bone anchored hearing device - Osia. Hearing loss is a always difficult but when it goes from 60 to 0 in seconds it's very traumatic and scary. I found it very difficult to find help & fast enough. No one acted like it was a medical emergency. I've learned so much now but not in time for me it appears.
Barbara

Thank you for your advice. I also had excellent hearing before the airplane ride. It is very scary. I just felt the doctors I have seen just shrug it off and don’t really seem to care or dig in any further to the core root of the problem. I may try an appointment at Mayo- hopefully someone will show some compassion and dig further to see if something was missed or something else can be done. Have you been to Mayo clinic ?

Thank you for your advice. Yes the virus story seems to be something they say when they don’t know for sure and don’t have any real explanation for the loss of hearing. I’m going to look into Mayo Clinic for some help.

I felt the same. The ENT Dr just said "there has been no improvement and we've exhausted the treatments." And started to leave the room! I asked what the next step would be and he said "I'll have them schedule an appt in 6 months for a recheck". At this point I did contact UC Davis and they said I will likely not know the definite cause as that is the case most times with sudden deafness. Doesn't sit right I know! They also said I was outside the treatment window and I probably won't see any improvement if I haven't already but that in rare cases it spontaneously reverses. I pray you find the answers and treatment you need. If so please share.

Hello, I too had the hearing gone instantly in my right ear about 15 years ago. My ENT did the best he could and treated it aggressively with steroid injections/antibiotics, etc. I was lucky and was able to see him within 2 days. My hearing never returned and there has never been a diagnosis for why. I just felt it was one of those things that eludes any definable cause. As you said, frustrating. Wish I could give you some good news!
My family and friends have always been wonderfully understanding about my hearing. I am currently scheduled for a CI implant and will see what this next chapter brings.
Good luck.