My Tale So Far...

[NormC]

I've been using this website as a valuable resource for the last few weeks, and now that it looks like I'm to be a lifetime member of the club I figured I'll join. Maybe I'll learn something valuable; maybe someone can learn from my experience.

So to back up, 9 weeks ago I woke up with greatly reduced low-frequency hearing in my right ear. But this has happened before (allergies etc.) so I wasn't concerned. After a few days with no improvement I started on decongestants, then antihistamines, then nasal spray. After 2 weeks of that I went to my family doctor, who got me in to an ENT guy 2 weeks after that. He did an audiogram which showed about 30 dB loss at 250 Hz and maybe 10 dB loss at 500 Hz, and fine above that. He did a Weber test (512 Hz tuning fork on the forehead). He saw no ear wax, no fluid in the middle ear. So he concluded it's Eustachian tube dysfunction and will resolve in a few weeks. Wrong-o. (I'll explain why later).

I expressed my skepticism so he booked me to see another ENT, would have been for mid-November. But after another couple of weeks of no improvement, along with a lot of reading at this site and others I was pretty sure I needed to be competently examined, FAST. So I got on the cancellation waiting list for the new ENT, and got in to see him 3 days ago. You can probably guess where this is going... he said it's SSNHL, probably due to nerve damage, maybe as a result of a virus, and the likelihood of substantial improvement was minimal. He started me on a one-week course of prednisone anyway. No improvement so far, but we'll see in a few more days I guess.

In the mean time my family doctor also sent me for a CT scan a week ago. I got an iodine injection for contrast. No idea if this is related but that night the tinnitus started for real. A loud low-frequency roar. I couldn't sleep at all. Since then it's varied a lot but is always there. Major bummer as I'm a musician and audio engineer, and all music now sounds awful. I'm not quite ready to throw in the towel - we'll see how the next few weeks go.

So here's some "if I knew then what I know now":
- if you think you've got SSNHL (there's easy ways to check even at home) get to a specialist FAST
- if there's a long wait to see the specialist get on the cancellation waiting list
- (here's where the 1st ENT went wrong) if you get a Weber test, make sure it's at a frequency at which you have substantial hearing loss, or the sound will not lateralize and you'll think it's just conductive hearing loss. My ENT used a 512 Hz tuning fork but I didn't have enough hearing loss there to make the sound completely lateralize to the left. I later tried it myself with a 320 Hz tuning fork and immediately realized it was sensorineural.

So... I don't know how this will turn out but I'll let you all know one way or the other. Fingers crossed.

 

[billie48]

it looks like I'm to be a lifetime member of the club I figured I'll join. Maybe I'll learn something valuable; maybe someone can learn from my experience.

Welcome to the forum. Yes, there are many valuable resources at the forum for you to explore. You can try read up the success stories to help you with hope that you will be fine just like many members. You can look at the treatments and research sections to get some idea what are available or being worked on right now. If you can't find current discussions on things you are interested such as SSNHL, just do a search on all forums and you should find enough discussions on the subject. Of course, you are most welcome to share what you have learned about T to benefit all. Welcome again.

 

[billie48]

I couldn't sleep at all.

If you are still struggling with sleep, try mask your T at bed time with soothing nature sounds or whatever music pleasing to you and can mask T. Also when masking, try to set the volume slightly lower than T so your brain can gradually accept the presence of T and can then habituate to that sound. If you need more sleep help, then consider getting a prescription for short term such as Remeron, or try Melatonin. Search the forum with these and you will find many discussions on them. Take good care. God bless.

 

[NormC]

Thanks for the tips! I grabbed an iPad app that lets me control the pitch and volume of the noise it generates. Maybe I'll get a better sleep tonight...

 

[NormC]

Well, after a week of prednisone, I got my hearing re-checked and it actually improved by 10-20 dB in the low frequencies. The specialist seemed surprised. So he put me on a higher dose for longer. Maybe there will be more improvement, who knows? Of course the T is still there, but it varies a lot. Seems to be correlated strongly to being around loud low-frequency noise (I play in a band so this happens a lot) and, sadly, coffee. But I'm finding that by using sound effects (rain, pink noise, or a fan) at the right volume level, I can mostly mask it, so I'm not losing as much sleep as I did at first. Hopefully 2 weeks of prednisone will work twice as well as one!

 

[Mike Evangelo]

NormC,

I am also a musician and completely understand your situation. I have been taking a break from the drums, guitar, headphones and loud noises all together for almost 2 months now since I've been experiencing my ear problems. It really sucks, but I think it's for the best. I would try giving yourself a break loud noises for at least a week or so and see if anything changes.
I had a CT and was injected with iodine (last week), but I did not get the low frequency hum you describe. Also, it's good to hear that your condition is improving. Hope to hear more good news!

Mike

 

[NormC]

Finished the 2nd week of prednisone and although the LF hearing loss did not improve much, the T did! Now a cup of coffee no longer brings it on. (Band rehearsals still do, unfortunately, even with 33 dB earplugs). Two apparently-knowledgeable ENTs at the same clinic profess their bafflement and won't even guess at whether this is nerve damage, hair cell damage, hydrops or something else. And they're at a loss for further treatment. All my reading indicates there are a few low-risk supplements that at least a few small studies have shown help some percentage of LF sufferers. Given how poor all music now sounds to me, I'm willing to spend a few months and $100 - so I'm off to find some lipo-flavinoids. Will let you know if there's any success.

 

[NormC]

I've been on lipo-flavinoid for 2 months now (that and 3 l of water a day) and the results are very encouraging. The T is mostly unnoticeable except in quiet surroundings, and even band practices no longer bring on an attack. My low-frequency hearing has fluctuated a lot, but the overall trend is clearly upwards. The last few days my hearing is better than it's been for at least 4 months. Got another ENT appointment coming up - will see if that suggests anything to him.

Clearly YMMV, but at least you people with sudden sensorineural hearing loss affecting low frequencies, don't give up hope, even after months of degrading hearing - it can come back, even if only partially!