Not Much Unlike Many Others Here...

No, but I am allergic to penicillin. In fact, I've taken clarithromycin several times and it actually agreed with me, i.e., no upset stomach. And I thought that clarithromycin would be safe, for not all antibiotics that end in "mycin" are ototoxic. Antibiotic ototoxicity typically refers to the aminoglycosides. But clarithromycin is a macrolide. Apparently that class is also ototoxic.

Thank goodness you are returning to baseline so perhaps nothing permanent was done. I have no idea why you got TTS. That should not be antibiotic related. Perhaps, you have some swelling in your ear--from the clarithromycin reaction--and as the inflammation leaves to too will your TTS.

Keep up with the magnesium. It's so useful for tinnitus and for nerves in general. Here are some guidelines for taking it:

http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/supplement-guide-magnesium

And I would probably add krill oil. Krill oil is great for inflammation. I'd take one pill a day. Schiff's makes a good krill pill, but Target just came out with a generic version and it's much cheaper.

Besides the krill, coenzyme Q10 is an excellent antioxidant and may help your ear heal.

http://www.webmd.com/vitamins-and-s...-nci-questions-and-answers-about-coenzyme-q10

You might try the krill first for a week or more. Then try the Q10. The supplement is supposedly good for tinnitus, but it made mine a little louder. But tinnitus is so individual.

http://www.uofmhealth.org/health-library/hn-2831009#hn-2831009-uses

Here's the specific info on tinnitus from the University of Michigan site, listed above:

Tinnitus
In a preliminary trial, supplementation with coenzyme Q10 (CoQ10) in the amount of 100 mg three times per day for 16 weeks significantly improved tinnitus in people who had initially low blood levels of CoQ10. However, CoQ10 was not beneficial for people whose initial blood levels were not low.81​

I hope this information helps, and I know you'll habituate soon. Your body is still healing from the antibiotic!

 

@jazz clarithromycin (biaxin) is the antibiotics I took back in May and it did NOT agree with me... I mentionned it in another post but my inner ear supposedly became swollen (the ENT said that, not sure if true or not). I had vertigo, T went throught the roof, vomited and couldn't eat anything for 10 days, had troubled intestine, couldn't sleep, had panic attacks, ears became "full", I felt like I was going deaf...

Most symptoms I could live with except the louder T. It was so loud it even covered the shower, city traffic, music, anything... I could not mask it. I discontinued Biaxin after 7 days, the symptoms gradually went away, except the louder T... it has been going down for the past 6 weeks and almost back to baseline.

The ENT I saw told me he had seen such reaction to Biaxin but never with permanent side effects. So far, the T is still louder and different from before...

If it stays at that level (and reactive), I can live a normal life... I'm beginning to habituate to my new reality. The ear fullness on the right worries me thought...

 

That's why I recommended perhaps taking some supplements to help with the inflammation. You are still early into the new tinnitus. It is very possible that the tinnitus will resume to baseline with no increase. The fact it is still louder and you have fullness indicates--to me--that you still have inflammation.

That's great! But I'm sure you'll get lower over the next several months.

 

@jazz the fullness was in the left ear back in April and these days, it is in the right ear.

Last night, I realized that my right nostril was cloggued. I blew my nose several times and my ear cleared. So to me, it sounds like it was a problem with my ET.

I'll be honest: I'm scared of taking anything at all besides magnesium...

And also, last night, despite my right ear fullness, I realized that my T was very very low and I enjoyed every second of it !!

Today the fullness is not as bad and I make sure to clear my nose every 2 hours!

 

I really think it has something to do with the ET because I feel like I need to scratch inside my ear...

 

I wanted to follow up here with an update, since it's been a while since I first posted my story and the followups. To recap, I tried a pure white-noise masker in one ear from Starkey. It didn't help too much. The Tinnitus seemed to get louder when I introduced the white noise directly in the ear. I then tried the Widex fractal tone generator. I didn't like that at all. I was able to function with the tones in my ear all day, but I didn't see any change in my T and I also started hearing phantom fractal tones when I took the device out...especially when trying to fall asleep. So I returned that one as well.

I started looking for a new audiologist - one who had specific experience and was "known" for treating Tinnitus patients. I did find someone in NYC who I made an appointment with and who I liked very much.

He fitted me with regular Oticon hearing aids and is giving me 75 days to evaluate with follow up appointments every 2 weeks to check-in an make adjustments. So far, the hearing aids have provided the most relief for me of anything else I've tried. I wouldn't say that they eliminated the T 100%, but they certainly have taken the "edge" off quite a bit. I also am hearing much better than before, which is nice. I hadn't realized how "dull" the world sounded due to my hearing loss. Now things sounds "crisp" and clear. My hearing loss was minimal, and under regular circumstances (i.e., if I had no T) I would not be a candidate for amplification. But the audiologist explained to me that by amplifying just the sounds in the high frequency range where I most likely have hair cell damage, it would provide the brain with the sounds frequencies it has been missing and thus "filling in" with the T tone. My perception has been that he is correct. I do find that the hearing aids provide "cover" in most situations -- except for absolute silence.

I've been wearing them for two weeks - all day, every day. I put them in in the morning and take them out at bedtime. Yesterday I went back for my first set of adjustments, which the audiologist made based on the logs that the device keeps that indicate my ideal volume level, the types of situations I am in most of the time, etc. He raised the amplification a bit in both ears, and in the right ear (where I preceive my T) he widened the frequency range a bit as well. So far so good. Again, I've given up on finding 100% relief, but I honestly wish I had tried hearing aids years ago, because I do feel that they certainly do a good deal of good...at least so far.

More to come...

 

Thanks for checking in.

A respected forum member told me in a private message conversation that one of his close friends said his T went away after using properly calibrated hearing aids and did not return after taking them out, even for extended periods of time. One of my concerns is T increasing bc of the amplified frequencies but I guess that's the individuals responsibility to get it calibrated properly.

When you remove the hearing aids, is your T immediately there or does is gradually return?

You mentioned you didn't realize how dull things sound until you got the hearing aids. I hope you don't mind me asking and it would be great to share to give others an idea, what is your hearing test results?

 

Hi. I am happy to share my hearing test results. It's included at the bottom of this post.

First things first. As one can see from the graph, I have nearly identical hearing loss in both ears. Two audiologists and my MD have told me that this is a great sign because it almost totally rules out that my T is a result of an acoustic neuroma or something scary like that. They said that they would be much more concerned if there was a dramatic difference between the two sides. This pattern, I was told, is very consistent with T related to sudden loud noise exposure or continued exposure to sound above specified dB levels, as would be the case for people who work in loud environments, like factories, for example. As I stated earlier, I can trace my T back to an incident in a dance club when the music was just so loud, that I actually felt a tiny vibration in my right ear. The T started the next morning.

In terms of my hearing loss, it is not severe. It sits along a steady line in the 3000Hz - 7000Hz range. This makes perfect sense, since when I measured my T on audionotch.com, I consistently came up with numbers that hovered around the 13000Hz mark. Because of the octave effect, half of 13000 = 6500, so the measured sound at the higher pitch is a single octave above where my loss is.

I want to reiterate that the hearing aids (which, btw, I am still in the process of seeing the audiologist every 2 weeks for measurement and further calibration) do not eliminate the Tinnitus. What they do for me is soften it considerably in certain environments. If I had to pick a number, I would say the "softening" effect is about 70%-75% of what I was experiencing before. During the first 2 weeks I was wearing them, prior to my first calibration appointment, I would say that number was closer to the 40%-50% range.

What is happening here is that the hearing aids are amplifying ambient sound and boosting volume and clarity of speech and other sounds that fall within the range of my hearing loss. The result, I believe, is that the T is beginning to take a back seat to those sounds, so my brain considers it to be the less interesting or prominent thing to be paying attention to. I think that's good news, so I'm going to continue (I have until October to make a final final decision.)

But there's also not so good news. In silent environments, the T is there, because the aids have nothing to amplify. When I take them out at night, the T is there. When I wake up in the morning, the T is there until I put them in. The volume or tone of the T has not changed at all without the hearing aids. Also, when I first remove them, the T sounds a bit louder and more noticeable. This usually goes away within a few minutes if I don't focus on it or let it get me panicked. It's usually around bedtime that I take them out, and that's when I turn my white noise on in my bedroom, so I'm learning to manage.

And that's what I think the key is for all of us T sufferers: manage it. Whether it be through habituation, CBT (that a lot of people have said good things about, which I might try at some point as well), retraining therapy, sound therapy, white noise machines, maskers, hearing aids, etc., one needs to find the right combination of instruments, activities, behavioral patterns and thought processes that works best for him or her.

Of course I wish that one day there will either be drug therapy or stem cell research that yields other possible cures, and that I can wake up one morning and be rid of this dreadful condition. But until that day comes (and I do believe it will come in the next decade), I'm just going to do what I can.

Finally, as far as one of your connections saying that the hearing aids totally rid him of his Tinnitus, I can certainly say that this has not been the case for me. Everyone is different, so I am very reluctant to call that far-fetched...if it truly happened, then congratulations to him or her. And in terms of your worry that hearing aids may amplify your T, I did speak to my audiologist about this because I had the same fear. His response was that he has worked with many T patients and done research as well, and he has taken before and after measurements over the course of weeks and months. What he found was that although the perception of the T was that it was louder after the hearing aids were removed, in actuality there was no change in the measurement of the T. That seems to imply that the perceived loudening of the T could be because it is a relative comparison to the state of relief that the hearing aids provided. It makes sense to me.

New York State (where I live) mandates that patients have 45 days to return hearing aids with a maximum "restocking" charge of 10%. My audiologist offers 75 days. So my outlook is that there is a coupe of hundred dollars at risk here, and I have the time to assess whether the difference the hearing aids are making would be worth the expenditure of a couple of thousand dollars. So far, I am leaning in the "yes" direction, but I recognize that everyone's situation is unique to them. But if you can afford the risk, I don't see what harm can come of trying.

Hope this helps.

 

Thanks so much for the information in your posts. I am currently researching doctors/specialists in the New York City area that treat T. Would you mind sharing your doctors names?

 

Sure!

See Dr. Craig Kasper, here:

http://www.newyorkhearingdoctors.com/about-us/staff/

Good luck!

 

I believe your introduction is amongst the "top 3" best ones of all time.

Your approach and reflections are no-nonsense and easy to follow.

As always, audiograms are informative - thanks for sharing. Your audiograms are like taken out of a textbook; you have the "classical" (and symmetrical) notch hearing loss at 4 kHz - which over time has grown into a cookie bite (again very symmetrical, left/right ear). As is well known, the main culprit for this type of hearing loss is noise.

With a bit of luck, there will be relief sooner than the next decade timeline you mention elsewhere in your other posts.

 

Thank you for your kind words. Encouragement is always good and can come from the most unexpected places, which is why sites like this are helpful to many.

Who are the other 2? haha

Thanks again!

 

Thank you so much for your posts, @NYC50! I find myself now in a very similar situation to yours, but I am about to shell out $4000 for a pair of Phonak hearing aids, and it's very helpful to read about your experiences. I have bilateral hearing loss and bilateral T + hyperacusis. Like yours, my audiologist said she wouldn't recommend hearing aids yet if I hadn't asked for them specifically to help with the T. After reading a number of posts here from people saying their hearing aids had helped, I asked my audiologist if I could try some. She actually loaned me a pair for a weekend, and spent an hour & a half with me setting them up. She tried the built in noise generator at different pitch levels, but I just found it annoying and went with simple (mild) amplification. I had tickets to an acoustic concert that weekend, and I was terrified that my T would not allow me to enjoy the performance. With the hearing aids, I not only heard every nuance of the concert (which had some very soft parts that I surely would have missed), but I wore them at home as well and noticed that I could hear the TV better, etc. The T was still there, but I found it less bothersome somehow, and my hyperacusis didn't seem to be aggravated (which I worried about). I pick mine up next Tuesday ... here's hoping!
Best wishes,
Della

 

Best of luck @Della !! Keep us posted as to how things are going.

I'm about 7 weeks in with my hearing aids. If I had to gauge the level of improvement that I'm experiencing, I would say about 65%. For me, that is enough to have made the investment.