Recovering from Severe 24/7 Tinnitus

Hi All,

I thought about posting this in Success Stories, but I'm not quite there yet. However, I still thought it worthwhile to share that, as of now, I am someone for whom extreme 24/7 tinnitus has significantly abated, and moreover, I am someone in whom it shouldn't as I'm deaf. There is indeed hope!

Back in late February, I suddenly began experiencing loud rumbling, whooshing, buzzing, clicking, banging (like someone hitting my head), metallic thumping sounds (like my head had turned into a metal bucket with someone hammering on the sides), electrical zapping (like being tasered!), musical tones, drones, and extracts from songs! Some combination of this would be 24/7. Now, being deaf, I have always had the usual high-pitched ringing which is maskable by my cochlear implant, but none of these new sounds were - in fact, they seemed to get louder when my implant was on! They competed with everyday noises and I could hear them clearly over traffic, the television, in restaurants etc.

Alongside the sudden onset of mainly low frequency tones I began to experiencing a peculiar echo-reverberation effect when hearing voices, with my own sounding like a megaphone. My implant was also distorting sounds on a near daily basis with words sounding robot-like and breaking up. Then came physical thumping sensations in my implanted ear like machine gun fire. Needless to say, I went to a very, very dark place and spent the better part of two months in bed scared out of my mind with sedatives. At one point, I was suicidal. I had to interrupt my postdoc and withdraw from academic commitments as sustained concentration was impossible. Panic attacks were a daily occurrence as I really thought all of this was here to stay due to my deafness.

I had an MRI and CT. Initially, it was suspected that I had mastoiditis, but further investigations revealed it was scarring from my implant surgery. Scans also revealed that an artery (sigmoid sinus) was protruding a bit too close to my middle ear, and there was something about a "high riding jugular bulb" which I was told explained my hearing blood flow.

But .... in May I noticed that some of the sounds had completely stopped, and what was left (whooshing, low musical-type-drumming tones) was fading. I didn't dare to believe it as I had had relatively quiet days before only to wake up with a blaring symphony in my head. Then came periods of silence! I was stunned and kept "checking" to see if it had come back (yes I know we shouldn't do this). When it did return, it was very faint and no-longer competing with external sounds. The T also moved to my ears from the middle/back of my head, and the sound distortion, echoing, and other weird effects from my implant stopped. My last episode of thumping sensations was at the beginning of June. Right now, I have a very low hum which is no longer overpowering my entire head.

My implant surgeon seems to think it was all triggered by a combination of an inner ear infection and stress. He was reluctant to say it would never come back, but did agree that all the signs are promising: he said they don't regard T as permanent until after a year, and that in a small number of people things improve - I seem to be among them and feel VERY lucky.

What did I do? Well, sometimes all the wrong things! I drank too much wine too self-medicate, took valium some nights to sleep. Mid-May I started Sertraline (Zoloft), though if I'd read some of the scare stories on-line I might never have taken the first dose.

I have made some massive changes in my life to minimise stress. I have opted out of academia for now choosing to work on my own project in my own time as I am very lucky to be able to afford not to work. I really don't need the pressure of meeting publishing targets, applying for grants, and dealing with (some) entitled students. I sleep as long as I need and take long walks with my dogs. I am keeping things very simple for now. I feel like I essentially had a nervous breakdown and now I am slowly recovering.

When my implant surgeon started going on about stress I was initially in disbelief, but he is right. For me, stress may not be the sole cause of whatever happened to me, but it definitely did make the T louder.

I don't know if the new T that I seem to have been left with will ever go completely (I suspect not), but I can barely hear it at the level it's been for a month.

Forums are filled with depressing stories about how severe T is lifelong. I am someone with all the risk factors for it and even I have significantly improved.

Hope some of you might be reassured by this

 

@Error404,
It is wonderful to hear that you are doing really well and hope it's going to stay that way for you from now on after suffering so much.
It sounds like your life changes are helping you also and great to go for lovely walks with your dogs as I miss that since my dog passed away.
It is so nice to hear a member is doing well and brings a smile and warmth knowing Tinnitus Talk were here for you too!.
Great if you can help support others or we can @ your name if others have trouble who have a hearing loss or Cochlear implants.
love glynis x

 

Dogs are very therapeutic!

At my worst, we had a dog walker come as I could barely move. Now we're back out twice a day.

I'm not 100% yet, but compared to where I was, it's a massive turnaround.

I suppose my big fear is that it will come back, but realistically, there is no reason why it should if it was infection/inflammation related. I was in sheer disbelief that the brain could generate so many noises, but I suppose dramatic symptoms can be produced by fairly non-serious things.

The impact of stress just isn't worth it. I feel rather lazy at the moment sleeping 10 hours a day and not doing much, but I've had to get things under control. After our holiday, I'm going to look into a part-time non-academic job to have more of a sense of purpose, but really cannot see myself returning to any pressurised environment. This sort of T teaches you very quickly you need to do everything to keep calm.

I still have my usual high-pitched ringing, but that's my silence so I don't care (though of course, this distresses some).

 

Thank-you for this post, @Error404.

You may not be "quite there yet," but you have come so far, in my opinion. This is a success story, it truly is.

I wish you all the best.