Do I Have Otosclerosis? Or Am I Just Crazy?

Hi, it is me again.

This is week 7 of worst tinnitus in my life. I'm not improving, not a bit.

I'm still trying to find the cause. I was going to physiotherapy, half of the sessions are behind me, with no change to tinnitus.

I did not experience any noise trauma prior to my tinnitus onset. I barely used headphones in my life. Except for a few short episodes for a couple of weeks. I bought earbuds, but they broke so I stopped using them. And I used them no more than the phone allows for safe hearing, so max 60%. But that was a long time ago. For more than a year I hadn't used any headphones or earbuds.

In March I bought headphones, used them at LOWEST volume for one day, and the next day the horrible tinnitus started.

But, I remember that I have been noticing some new fleeting tinnitus tone (10 second long episodes) a few days prior to my tinnitus onset (also prior to headphone use), but I didn't care. It might or it might not be connected to this new bad tinnitus I have, I don't know, but I had an episode of fleeting tinnitus today and it sounds almost the same as my normal tinnitus, just amplified in volume.

It's been 2 years since my first tinnitus started. It was very mild. But I suspect it had been worsening but I didn't notice because I was habituating. I also took Ginkgo Biloba for a few months, so maybe I got the placebo effect, I don't know.

So, to my question. I have had almost zero noise exposure, no acoustic trauma prior to my tinnitus onset (the headphones were at playing at 35 dB), and I haven't been using any earbuds for a year. Despite this, I think the tinnitus has slightly worsened, even when I didn't realize it, because I slowly habituated.

I have read about otosclerosis. And that it targets young people, starting from their 20s (I'm 19). I don't feel like I have hearing loss, but I noticed that everything sounds kind of distorted, or weird. Music feels like it is playing on an old cheap speaker, even when it is running from my laptop. It really feels like there is some conductive error in my auditory system. And I have also found out on one website (some tinnitus tones generator) that I hear tones below 200 Hz much more silent that other ones. Not sure if it is normal or not, I cannot trust my ears anymore.

My neuro also doesn't think I have noise-induced tinnitus, and sent me to an MRI (I will go there in a few weeks).

I don't know what to think about otosclerosis. I'm kind of stressed. I read that otosclerosis can be treated with surgery and for most the tinnitus goes away afterwards.

I didn't find much information about otosclerosis here on Tinnitus Talk. Despite the fact that the prevalence of this is 1-2% in general population, and most sufferers also have tinnitus.

Does anyone here have otosclerosis? Is it possible I can have something like that?

 

Have you seen an ENT? If you have conductive hearing loss it should show up on an audiogram and give you a work up even if you don't.

 

I have otosclerosis. It is possible you have it, but it's unlikely, given your age.

When I was in your shoes, I went down the diagnosis path with my doctors: there are a few tests to run and collect clues. Your doctors should know what to do.

 

Yes, I've been to ENT but he just looked into my ears for wax and found nothing and said that currently it is an untreatable diagnosis and that I need to just hope it will fade. He didn't do any hearing test because he said it's unlikely I have hearing loss, especially at my age.

Yes, it may be unlikely for my age, but after I got a mini brain stroke at age 18, I feel that age is just a number. Even this tinnitus alone. I'm sorry but apart from Tinnitus Talk community I don't know anyone who has tinnitus and is not a senior. I try to find the cause hardest I can. I just cannot believe that one time headphone use at a lowest volume caused me such brutal tinnitus and other ear problems that I didn't even know existed.

Perhaps I don't have otosclerosis, but I just want some cause that is treatable, ideally by meds, but even a surgery is better than nothing a.k.a. CBT. I am going to have an MRI, my neuro believes that my tinnitus is caused by either C-spine or something in my ear, that can be maybe seen with MRI. But I am going there in mid May and it is going to be a long few weeks till I, hopefully, know the reason for my tinnitus and my mind just cannot be calm and forces me to create various conspiracy theories what is behind this hell.

 

I second that. Let the doctors (ENT and neurologist) go through the process of elimination. I'm currently going through the same path and I can relate to anxiety the not knowing causes. But have hope and in no time the doctors will have conducted all the tests they need to conduct and you have answers. The best thing you can do now is control your stress and anxiety because if you don't, it will make all the symptoms worse. Trust me.

It's easier said than don't but you can do it.

 

I hope but I am afraid that they will never find it out and I will never know what happened and I will hate myself for life for using the headphones. I hope they find out the cause, even if it won't be curable, but I hope it is something that I couldn't have averted by my lifestyle. Just for that inner peace in my soul that I didn't do anything bad and I had just bad luck. But mainly I hope that it is curable at least to some extent.

But I am not anxious that the process of elimination is long. I am anxious because they are eliminating possible causes from most trivial ones to most complex and untreateable ones. You know what I mean. That when you first get tinnitus you might say oh maybe it is just too much wax, or something trivial and you are positive. But then they find no wax, no infection, and so on.

Now I am at the stage where maybe this otosclerosis might be easiest to treat from what's left. I am anxious because it converges to diagnosis noise induced permanent cochlear damage which only God himself can cure.

 

You can’t go there. You can’t blame yourself and go over every little thing you might’ve done or might not have done to cause tinnitus. According to my otologist, there are so many things that can cause tinnitus that it can be very difficult to discern what is causing it. There’s some obvious things they can rule out but for most people they never really find out what the cause is. He said even with medication unless it’s something like chemotherapy drugs that they know are truly ototoxic and damage the hair cells in the ears, they can’t even say that a certain medication for sure brought tinnitus on for any one person. So you’ll just make yourself miserable in the end trying to figure it out and blaming yourself.

I am surprised your ENT didn’t at least do a hearing test though.

I know that I have tinnitus in my left ear from hearing loss. I have tinnitus in my right ear that is completely different than the one in my left ear. And I have no hearing loss in my right ear. And the ENT and otologist have absolutely no idea why. Perhaps it’s allergies, perhaps it’s my neck, perhaps it’s TMJ they say. It tends to vary -up-and-down loud, and quiet. It’s been super loud lately and worsening and I have no idea why.

I know this is a really scary time for you. I hope you get some answers and I hope it’s something that’s treatable. But if you don’t find the cause, hang in there and try not to be so tough on yourself. Most people habituate and move on to have a very normal, happy and productive lives.

My husband has had bilateral tinnitus since he was a teenager. It got much worse in college after he had a number of concussions from football. It improved after the concussions healed but he still has bilateral tinnitus. He can sit in a quiet living room and take a nap. Doesn’t bother him at all. He’s so used to it he doesn’t even notice it. And he can hear it in a loud restaurant if he focuses on it. I can’t do that -mine is mostly covered up in a restaurant. I offer this just to say that people do cope and you will too.

Hang in there.

 

I was diagnosed with Otosclerosis early and had the surgeries at 17.

I can tell you that the number one thing my ENT did to diagnose it was hit his elbow with a tuning fork and pressed it on the orbital bone behind my ear. He asked me if it was louder there or just held a few inches away from my ear. It was louder on the bone.

Of course many more tests were performed after that just to be sure but it was obvious I had severe hearing loss.

I don't know who said the tinnitus can be lessened or go away after surgery but that is definitely not the case with mine. It increased drastically. The trade off was I gained conversational hearing with the surgeries and learned to live with the tinnitus it caused.

 

If you are worried about otosclerosis, you should get an audiogram, because a sign of otosclerosis, the air-bone gap might be detectable on that, but bear in mind, that other conditions can cause conductive hearing loss as well.

I know, it's tempting to search for something treatable, but unfortunately although to some extent the conductive hearing loss can be reversed by surgery, tinnitus doesn't go away for that many people. It can go away, stay the same, and even get worse as a risk of the surgery. And the condition is progressive, one may need additional surgery later on.

 

That's the Rinne test:

https://www.uptodate.com/contents/image?imageKey=PC/58032&topicKey=PC/15359&source=see_link

It wasn't the case with my surgery either, but the statistics do put it at roughly 50/50. I think if you do have sensorineural losses in addition to conductive losses, the chances of resolving tinnitus via surgery aren't great because it won't address the former, only the latter. What's worse is that a typical outcome of a stapedotomy is more sensorineural losses in the highs, which won't help your tinnitus obviously. I did get some worsening from surgery, but as you point out, it's a trade-off.

What does your audiogram look like nowadays?

How long ago did you do the surgery? Was it just one ear?

 

I am waiting for my latest audiogram in the mail. But when I briefly discussed it with my ENT, my lows are maintaining a moderate loss and my highs are definitely declining. When I get my hands on that document I can better answer this.

As for the surgeries, I had both ears done in 1999. I was 17 and had severe conductive hearing loss. My right ear was first and we did the left about 4 months later. I still remember the total exhilaration upon learning that when you brush your ear with a finger it actually makes a noise! I don't have that good of hearing anymore but the surgeries totally changed my life! I would do them again if I could and suffer the doubly increased tinnitus if it were an option.

 

My tinnitus increased (and still increases) exponentially after stapedectomy.

Literature suggests that a great number of operated patients have a reduction or complete resolution of their tinnitus - I don't remember numbers but it was over 50% with an improvement or no effect on tinnitus and about 20% worsening. I was unlucky (and still am), which stopped me in my tracks thinking of operating the other ear also.

 

OK. Are you taking any Fluoride?

Is this correlated with a worsening of your hearing?

 

Hard to tell but the tinnitus increase has been exponential to any hearing loss increase that might have happened in the last five years (since onset & surgery).

Very likely you are correct though, it has also crossed my mind.

 

I have had otosclerosis (since I was 13-14, now 20). It doesn't seem like you would have it considering your tinnitus has been present for a while and with little noticeable hearing loss.

I am an odd case I guess, with tinnitus only recently affecting me despite having the disease for many years, so I have little understanding of the causes and types of tinnitus.

I have one good ear and one bad ear. Music and sounds don't sound distorted in the affected ear like you describe (with volume loud enough music sounds the exact same as it does in the good ear).

An ENT would probably check for conductive hearing loss using a metal tool (in which you may hear the sound mostly in the affected ear).

Is your tinnitus bi-lateral? With otosclerosis one ear is usually affected before the other.

Anyways, I wouldn't be hoping for your condition to be otosclerosis, it is not entirely treatable.

I'm afraid to give advice as I'm relatively new to all this, but it seems that living in fear of sounds, headphones etc is not going to help and that headphone usage at a non damaging volume is unlikely the cause.

Something that may have helped me was apo-betahistine (it's used for treating Meniere's disease). I've been taking it while waiting on an appointment with my ENT and my tinnitus has dramatically decreased. Perhaps give that a go, just beware it gave me some bad headaches and makes me pretty tired some days.