Hello Everyone. Not Sure What to Make of This.

[Baxter]

I've been lurking here for a while, and I am making this thread both to introduce myself and to get people's thoughts on what exactly is going on with me, and what I should expect.

First off, I should probably say that I am probably a bit of a weird case. I have voluntary control over my tensor tympani muscles in my middle ear, and for a few years now I've had this nervous tic where I tense those muscles over and over. For a while, my ears had this "full" feeling, and I figured I was causing damage by tensing this muscle, but I was told by ENTs that this was impossible.

Anyways, I have tinnitus now. I'm not entirely sure when it began. I think I had a low hissing/static sound for about a month before I noticed that there was a much higher pitched, intermittent screeching sound in my right ear. It was very faint, but audible enough that I could hear it. I'd already been obsessing about my hearing on account of the fullness, so I pretty much launched into full obsessive mode over the tinnitus.

Since then, it's fluctuated in loudness and type, but right now I would say it's the worst it's been. I am not sure how much of it is psychological, and how much of it is just "there". I've had my hearing tested and told it's fine. I saw another ENT and I was told that there was some inflammation in my sinuses, and that I some slight Eustachian tube dysfunction, so I took flonase for a month and went back. She said my Eustachian tubes seemed fine. She said it was likely that the tinnitus was from that, but the problem is that it's still there, and seems to be getting worse. So I don't know what to think anymore.

I had hyperacusis for a while, but that's not as bad now. I think a lot of it was just me freaking out and worrying about sounds making the tinnitus worse. So I really don't know how much of this is psychosomatic.

I've been on a number of drugs at this point, including clonazepam, seroquel, and metazalone. I'm still tensing that middle ear muscle, along with tensing my jaw, so maybe I am irritating the trigeminal nerve and that's what's causing it? I don't have any hearing loss and I didn't hear any suddenly loud sound that caused it.

I just don't understand why it seems to be getting worse, and I worry that it will continue to become worse. Right now it's sort of like there are crickets in my ears. It's sort of like, the sound a laptop hard drive makes when it's being read, except higher pitch. I can't pin down any particular tone in hz because it's not a pure tone.

I've seen people on here post about visual snow syndrome, which can cause tinnitus, and I do think that my vision is a bit static-y, though maybe that is just me obsessing too much.

What do you guys think?

 

[Samantha R]

@Baxter
Sorry to hear you are going through this ordeal.
We sound kind of similar - my tinnitus started off as a low hum that went away after a week. This caused me to be obsessed with my ears and I noticed tinnitus that I had always had. It seems to have gotten louder too (though it does get quieter at times), and like you, I wonder how much is psychological. Am I just now paying attention to a noise I've always had or had it indeed got worse?
I don't know.
I did visit an audiologist who suggested I may have TTTS. Maybe, but who knows.
If I were you, I'd stop playing with the ear muscles, just in case!
I'm a few weeks in now, and I've stopped obsessing about the noise as much now, but it still bothers me at night. I am taking Mirtazapine at night which helps me with sleep.
I've got some jaw issues that I'm also following up in case these are the cause, but as time goes on, I am becoming more relaxed about things.
I am also seeing a Tinnitus counsellor and doing mindfulness. I was a skeptic at first but they are definitely helping.

Sam.

 

[Baxter]

@Samantha R
Thanks for your response. I agree, our cases do sound a bit similar. The obsession over the general hearing/ear area precipitated the tinnitus itself.

I do also wonder how much of the tinnitus has always been there (and is just me noticing it) and how much of it is "new". It's certainly not as loud as what others I've seen on here describe, like a jet engine that can be heard anywhere, and I find myself checking for it and confirming whether it's there. The fact that I have to check and confirm means it's not terribly loud, right? Though sometimes I can very clearly hear it no matter what.

As far as TMJ issues go, I've been told by a TMJ specialist that in his experience, about 10% of people who come in with both TMJ issues and tinnitus experience relief of tinnitus symptoms upon treatment of TMJ stuff. But he said that if you're in that group of people who it would help, it's 100%. I'm going to get a bite plate, but I'm not going to get my hopes up too much about that.

Can you tell me a bit more about the tinnitus counselor? I wasn't aware that there was such a profession. Is it a cognitive behavior therapist who happens to know about tinnitus, or is it someone who focuses on entirely on tinnitus?

 

[Samantha R]

@Baxter
Your tinnitus does sound mild, but it is all about our reaction to it that really counts.
What you might find annoying, might not annoy the next person.
I usually don't hear mine during the day, but at night the volume goes up.
I find it hard to believe I never noticed it before, but one can't underestimate the power of the mind.
I hear what you say about the TMJ issues. I expect not to be in the 10%, but I've got to try. I've also recently started clenching, grinding and snoring, so at the very least it will help with that.
I found a practice of psychologists that deals specifically with tinnitus, it's near where I live in Melbourne. I thought that was better than seeing a regular counsellor or psychologist.
Try your very hardest not to check and confirm, easier said than done though.

 

[Baxter]

@Samantha R
Right now, the tinnitus is loud enough that I can hear it no matter what, even without checking. I am on the east cost of the US, so as you can see from the hour that I am posting (nearly 4:30 am) it's keeping me up! It wasn't this bad in the beginning.

I think at it's current level, there's no way it's been here and I've never noticed it before. But I don't know how much of it is just being amplified by the fact that my mind is recruiting neurons to focus on it (and also the degree to which it might become quieter by the reverse happening). From what I've been told, psychological and neurological phenomena are all part of the same picture... but who knows how much truth there is the whole neuroplasticity thing when it comes to tinnitus.

I'll try to look around my area to see if there are any therapists who specialize in tinnitus. What exactly has your therapist told you to do? I've seen a regular CBT therapist, but so far I don't know how helpful it's been. He tells me that I need to stop obsessing and trying to seek definitive answers, but it seems to not matter how much we talk in the room... I'm still stuck here in my bedroom at 4:30 am with this sound in my ear and I don't feel at all good about it. It's very distressing! I feel like this isn't how the therapy should be, really. So this is why I ask what sort of things your therapist ha you do that you say seems to be helping.

 

[Samantha R]

@Baxter My tinnitus is way louder at night and I know this is not just perception. It is louder. I have had quite a few sleepless nights too with T blaring at me. Getting sleep with the help of mirtazapene has been a lifesaver. It's also an Anti Depressent, which I definitely need at the moment thanks to tinnitus.
As for the counselling, I've only had one session so far, but it was helpful so I am going back.
We focused on reaction to the tinnitus, and things to change my way of thinking about the tinnitus. It can't hurt me, it's just a noise. I don't check the loudness of the tinnitus anymore sand I am living more in the moment, putting all my energy into the task at hand (except I do notice it at night and it bothers me, I wish it didn't). That was a big step for me.
When my mind wanders back to my tinnitus, or negative thoughts arise, I quickly distract myself.

Stay distracted and mask the tinnitus fully if that is what I need to do at the moment.

You really need to get your sleep under control, hard as it is.

Do you mask your tinnitus? I do but not as much as I used to.

I'm not sure we will ever know the cause of our tinnitus - so do stop obsessing about that if you can.

I hope you have been able to get some sleep.

Sam.