Welcome to DU! The truly grassroots left-of-center political community where regular people, not algorithms, drive the discussions and set the standards. Join the community: Create a free account Support DU (and get rid of ads!): Become a Star Member Latest Breaking News General Discussion The DU Lounge All Forums Issue Forums Culture Forums Alliance Forums Region Forums Support Forums Help & Search

Lisa0825

(14,487 posts)
Tue May 10, 2016, 06:49 PM May 2016

ISSNHL - Idopathic Sudden Sensorineural Healing Loss

I woke up with no hearing in my right ear a week ago (5/3). Odds for recovery are not in my favor according to the doc. I am on anti-virals and 80mg prednisone (lovely mood swings going on).

I have another appt in 2 days to see if any progress has been made. Then we will decide if I will get a shot in my ear drum, a tube in my ear, or shift toward "rehabilitation" (hearing aids, implants, etc).

I am sad and scared.

12 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies

marble falls

(57,073 posts)
1. Sounds to me that your health care professional is opening up a wide range of treatments....
Tue May 10, 2016, 09:25 PM
May 2016

That at least has to give you some confidence.

 

otohara

(24,135 posts)
2. This Just Happened to Me - Any Improvement?
Tue Nov 8, 2016, 12:22 PM
Nov 2016

I like you am sad/scared and the side effects of prednisone - ugh

Lisa0825

(14,487 posts)
6. I am sorry I never saw your post. I wasn't getting any notifications for a while.
Tue Nov 21, 2017, 07:27 PM
Nov 2017

My update is downthread. How are you doing? (((((hugs))))

TeeYiYi

(8,028 posts)
4. How did things turn out?...
Tue Nov 21, 2017, 05:51 PM
Nov 2017

Same thing happened to me, six years ago. Same ear. Perfect hearing until I woke up deaf. Worst thing ever.

Just wondering if you regained any of your hearing...?

TYY

Lisa0825

(14,487 posts)
5. I haven't had a new hearing test yet, so I can't say exactly, but
Tue Nov 21, 2017, 07:26 PM
Nov 2017

I have only gotten a little bit back... maybe 15%? It doesn't help in hearing anything clearly, but I have found that at times, it is enough for me to discern what direction sounds are coming from.

It took a while, but I did come to accept it. I even came up with a couple of advantages... I sleep better! When the neighborhood dogs start making a racket in the middle of the night, all I have to do is roll over on to my good ear, and it's all good! I have a white noise machine, but it wasn't enough to totally drown them out without turning up too loud. Second advantage: I work in a large open office with shared cubicles. Now, nothing disturbs me when I am on the phone, because I can't hear anything except the caller!

So the condition hasn't really improved, but I am OK. I do worry about the possibility of losing hearing in my other ear though. If that ever happened, I would definitely go for a hearing aid or implant. But as it is, I compensate well.

How did you do with it?

TeeYiYi

(8,028 posts)
7. Bottom line up front: I'm still completely deaf in my right ear...
Wed Nov 22, 2017, 02:52 AM
Nov 2017

...and about 40-50% deaf, with poor word recognition, in my left ear.

Prior to waking up deaf, I had perfect hearing in both ears. Now, I wear Phonak AudeoQ/BICROS hearing aids; primarily when I need to leave the house or talk to more than one person at a time.

I did the high-dose steroids for a month or so, but decided to forego the eardrum injections, after oral Prednisone caused all the skin to fall off the bottoms of my feet. I didn't think the potential damage to my eardrums was worth the risk; in the event that stem cell research might one day lead to a cure for damaged cochlear hair cells.

I'm still learning to adapt to being deaf. Besides the chronic dizziness and vertigo, I struggle with sound direction and spatial hearing loss. It's disorienting...and isolating. I don't feel safe anywhere but home, so I'm living a life of self-imposed exile.

I've also developed a severe hypersensitivity to certain sounds. The quietest sounds imaginable can make me jump. Just the slightest pop from the spit in my own mouth can sound as loud as a firecracker and make me feel like I'm having a heart attack. I have to keep background noise going at all times, even when I'm sleeping.

My brain is converting sound to my right ear, into head and body zaps. Sounds feel like waves of electrical shocks, through my chest and upper body...and head and arms. I wonder if this is what epilepsy feels like.

Did you end up doing the eardrum injections? Idiopathic sudden sensorineural hearing loss SUCKS.

TYY

Lisa0825

(14,487 posts)
8. No, I didn't do the injections.
Wed Nov 22, 2017, 01:28 PM
Nov 2017

After researching it, there was such conflicting information over whether they worked at all, and since in my case it was almost certain not to come back (based on statistics of people with sudden profound loss and vertigo), that I decided it wasn't worth the risk.

Have you tried vestibular therapy for your vertigo? I only got vertigo when laying down on my bad ear. I went to a Physical Therapist with certification in vestibular therapy, and she helped me with exercises that trigger it, and repetitions until the movements stopped triggering it. It reduced it a lot, and now when I get it, it is much milder and passes quickly. She said it may increase again later, but I can even do the exercises on my own if I prefer not to come see her for more visits.

Curious - Why do you only wear the hearing aids at certain times? I was wondering if you wore them more consistently maybe the hypersensitivity and other symptoms you are dealing with could improve? (I have no knowledge about this. It's just a thought that came to my mind.)

I am sorry it has affected you so much. Have you thought about talking to a counselor about the mental/emotional effects it has had on you?





TeeYiYi

(8,028 posts)
9. You're right about the hearing aids...
Wed Nov 22, 2017, 11:28 PM
Nov 2017

They need to be worn at all times, to allow the brain to adapt and discern the subtle differences between sound picked up by my good ear and the sound that the microphone picks up for my right ear. Once your brain figures it out, it starts to feel like you can actually hear again and the directional hearing loss is somewhat compensated for.

I don't wear them all the time because I live alone and don't think about it. I need to remember your suggestion and put them on when the hypersensitivity and brain zaps get out of control; usually at night, when I'm tired. I never really thought about it but it makes sense that they might help.

I'm going to try to start wearing them all the time for awhile, to see what happens. It'll probably take some time to get into the habit but I really think your suggestion is a good one, so I'll be giving it my best shot.

I'm also dealing with vision problems, since losing my hearing, so the hearing aids won't be a panacea.

I tried therapy. I'm gonna' need a better therapist.

Thanks, Lisa. I'll let you know if the hearing aids make a difference in the hypersensitivity. I think it's called "recruitment." If they help, I'll probably never take them off again.

TYY

Latest Discussions»Support Forums»Deaf/Hard of Hearing»ISSNHL - Idopathic Sudden...