My One Year Summary/Feedback

So, exactly one year ago I had acquired constant tinnitus from an antibiotic, paromomycin, which is an aminoglycoside. I struggled initially, but found some coping mechanisms which helped a great deal. Remaining active, running, biking, and spending time with friends and people I care about really shifted the focus. I also played guitar more often. My tinnitus faded into the background to the point where it affected me very little. NAC also helped early on as well.

I still experience reactive tinnitus in my left ear only, which is a changing pitch, in response to music, etc. My ears are also still more sensitive to noises, and my constant tone increases for a while when exposed to noise, but it goes back down again. I've become accustomed to it. I don't restrict myself from doing anything, and I also don't unnecessarily expose myself to loud noises. Basically, the same as before I had tinnitus.

The constant baseline tone doesn't go away, and it probably never will. But that part I've learned to deal with and I'm not afraid of it anymore. I used to only consider success as full remission and cure of symptoms. But that likely won't happen, so I don't consider this a success, but I returned to life as fully normal with some caveats. Maybe I learned better my limitations, and that nothing in life is guaranteed.

A few months ago I had a mountain biking accident. Nothing too crazy, but included a head injury. A few months later I had developed pulsatile tinnitus in my left ear only. Right before that I had experienced brief conductive hearing loss, mostly affecting the low frequencies, and feeling of fullness in that ear. I had an MRI and MRA after a few months. Also because I was having constant headaches around and behind my left eye. Something was up. The MRA indicated a Dural ArterioVenous Malformation/Fistula. And I'm now meeting with neurosurgeons and awaiting a cerebral angiogram. There is a tangled bundle of blood vessels on my left side behind my ear, which can be life threating, or cause disability. It's hard to say if this was caused by the accident or not, but apparently these are "exceptionally rare", and seem to be acquired, as opposed to congenital. It's likely I'll need endovascular surgery or craniotomy to treat it. I'm not to that point yet.

Anyway, I've had a lot of experience in a short amount of time with tinnitus, drug induced tinnitus, treatments, lifestyle changes, pulsatile tinnitus, etc. I still live a normal life and I'm affected relatively little so far from all of this. It's important to take care of yourself and maintain an accurate perspective and attitude. Please note that I didn't say keep a positive attitude or optimism. Sunny optimism in the face of real life problems can be harmful. Being accurate about your feelings and outlook is far more important. If anyone has questions, I can field them as best I can.

My life is going to change, but we also run risks every day of getting hit by a car or being killed or injured in some other way. Just remember this is your life, you're still here, nothing is guaranteed. I'm not saying you have to blindly accept everything that comes your way, but make reasonable attempts to address and treat what you can, and what you can't, just live your life normally still. Focus on what you can do rather than what you can't. Even with this AVM thing, it sucks. But, the way I look at it, is that I haven't had a stroke or hemorrhage, so I can plan it and choose my surgeon, etc. I'm not disabled or injured, and this can be treated.

Life goes on.

One piece of advice I can offer here: Your tinnitus may or may not away. There may or may not be a cure in your lifetime. Right now you have tinnitus, and right not there is no cure. Those things can change. I know a lot of you want to fight that and not accept it. That still doesn't change the reality of the situation. Continue living your life though, because you're not going to get that time back, and you may regret it later. And if it does go away, or there is a cure later, you'll know about it as will millions of others. It's not going to be a secret. And it isn't going to be affected by anything you do or don't do. The only real certainty in life is that you're going to die at some point in the future anyway, and anything can happen before that. Maybe that isn't helpful.

Another thing that has helped me is when I think back to a lot of the good experiences and memories I've had this past year, tinnitus wasn't a part of them at all. It didn't enter the memory or experience at all.

 

Thanks for this post. Maybe you should have put this in the Success Stories section.

Your conclusions mirror mine. Aging, losing that youthful feeling of invulnerability, realizing that bad things can and will happen to me as well, not just to others, was very painful. But such is the human condition. Shit will come down the chute, we cannot control that; the only thing we can control is our reaction to it.

The cool thing is: it is guaranteed to not last forever. Or your money back!

 

Great post, thank you for taking the time to send encouragement.

 

I don't consider this a success story. I'm not through it yet. There's still a way to go. But I believe it will be in the end.