Three and a Half Years of Tinnitus and Still Trying to Find My Cause. Keep Going or Give Up?

[Am92]

Hi everyone.

This will be my first post as a long time observer and I'm wondering if there's anybody out there that can give me some advice.

Three and a half years ago I was assaulted by a group of thugs and took multiple punches to the head. I never lost consciousness, however there was one punch that hit me around the ear/TMJ region that I believed caused the damage and my onset of tinnitus ever since. I have seen an ENT doctor who said I had a perforation, however another confirmed a week later it was just a thin layer of skin like earwax which he scrapped out.

Fast forward to today and although I have learnt to live with it, I would be lying if I said I didn't think about it everyday and unhealthily try and find my cure to the point it takes over my mind.

But am I right or wrong to keep pursuing a cure or should I just give up and accept it?

Here is some things that make me believe there is a possible fix:

. My tinnitus is morse code/electric buzz sounding and there is theories out there that suggest a link to this type to auditory nerve compression.

. I have a lump in front of my ear/TMJ (on the side of my tinnitus) that feels like a ligament that moves when my jaw opens and closes. It also crunches when I bite down. This is on the side my tinnitus is and is not on my other side.

. Doctors recently said I have inflammation inside my ear canal of the side I have my tinnitus and TMJ lump.

. My tinnitus gets louder when I open my mouth wide.

. My hearing tests indicate I have super hearing better than most people.

. I had an MRI that indicated no visible damage

So as you can probably guess, I'm pinning my hopes on some sort of TMJ damage/inflammation, that is causing nerve compression, causing my tinnitus. In my head if I can find my problem, I can hopefully get it fixed.

Problem is where I'm from doctors don't seem to care about tinnitus, because they cant see or hear it and so you just have to live with it. They frustratingly shrug off all my theories of what could be wrong, without giving me a chance and investigating these possibilities.

Like we all do I want this noise gone so bad, but I also want peace of mind knowing I did all I could to try and find my cure. Something got damaged that night that has not repaired since, but do I have grounds to keep going, or is it time for me to accept tinnitus. I do genuinely believe that I just need to meet the right person to help me, but I just don't know where to find that person.

What do you guys think could my issues be from a TMJ issue, or some sort of nerve compression, or even some inflammation within that area?

Sorry for rambling on I just really need some help getting my life back.

Thanks everyone and I hope anyone else suffering can find happiness in there lives again.

 

[Tybs]

Problem is where I'm from doctors don't seem to care about tinnitus, because they cant see or hear it and so you just have to live with it. They frustratingly shrug off all my theories of what could be wrong, without giving me a chance and investigating these possibilities.

This is actually quite common, apparently no matter the country. I'm sorry for your feelings of helplessness therein, I know what it is like...

Like we all do I want this noise gone so bad, but I also want peace of mind knowing I did all I could to try and find my cure. Something got damaged that night that has not repaired since, but do I have grounds to keep going, or is it time for me to accept tinnitus. I do genuinely believe that I just need to meet the right person to help me, but I just don't know where to find that person.

My advice would be two-fold, based on my own experience:

1. Live "one day at a time", in the acceptance that your tinnitus is a reality in the present. Learn how to fully live while having it around. IMO, this barrier must be taken care of first.

2. The first point does not mean you have to give up. Once you found peace with your current way of living, life also energizes you again. This does actually help in thinking clearly and, once the time comes, making discoveries about your condition that could ultimately help in getting things restored to the way they were. Having clean observations allow you to analyze the symptoms and retrieve objective data (for as far that is possible with tinnitus). No one but you can hear it, so you need mental balance to have neutral readings. Trust that, with time and occasional research, a cure for your case will be reached. Do not obsess over it, this will just bring you back to stage 1 again.

In short: first learn to enjoy life again in your current state. Focus on habituation, the rest will follow with time.

 

[JohnAdams]

Keep going, in your spare time.

 

[Am92]

Thanks for the quick reply guys, I have the upmost respect for people like yourselves that stick around to help those in need thank you both.

When you say keep going to find my possible cause of tinnitus, do you mean that as in keeping an optimistic mindset, or do you believe there is enough evidence there for me to have the possibility of a positive outcome in one day treating my underlying cause of tinnitus?

Has there been anyone on these forums with similar stories, that has had a positive outcome in the end even after 3 years in my case?

I hope I'm not sending myself on a wild goose chase and finding a cure is impossible.

 

[pinklights98]

Maybe you can try Botox?

 

[Am92]

Maybe you can try Botox?

Thanks, what effect does Botox have on tinnitus?

 

[Tybs]

When you say keep going to find my possible cause of tinnitus, do you mean that as in keeping an optimistic mindset, or do you believe there is enough evidence there for me to have the possibility of a positive outcome in one day treating my underlying cause of tinnitus?

Both, actually. I think you need a realistic amount of optimism when searching treatment, and your case seems clear enough to expect that hearing loss is not the cause. Technically we can't rule it out completely, but you have a clear time and situation that started it. Sorry to hear about the thugs, btw... awful what some people can do to others.

My case started in April this year after a bad fall from the stairs. My first ENT basically said "sry, you got to live with it" after a clean audiogram, the second one registered a minor dip at 8 kHz on a bad tinnitus day, and pretty much pushed on having hearing loss there with that being the cause, ignoring other symptoms that pointed in a different direction.

I couldn't take these diagnoses seriously, mostly because many symptoms were being ignored. I did more research on the internet for possible causes, and eventually found out that whiplash can also result in tinnitus, which can occasionally occur when falling down the stairs. Since I ignored my shoulder and neck pain in the first period after my fall, I started out with physiotherapy right away when I learned about this.

But I didn't fully trust my self diagnosis, I'm not a doctor after all. A third ENT took his time with the diagnoses and, combined with jaw scan from a dental surgeon, ruled out hearing loss, psychological issues and TMJ (for as far he can, of course). Based on my symptoms, he said it's either caused by neck trauma or turbulent blood flow, most likely the former. With that, he reinforced my own self diagnosis, and after ruling out obstacles in my neck vessels (by echo), I continued my program with physiotherapy.

Shortly after I started the therapy, my sounds stabilized: they still went all over the place, but I no longer got new ones every week. Three months later (four weeks ago), I started getting sound free moments during the night. In the last two weeks, these moments extended into the day, and the silent periods are currently increasing in time length.

Don't get me wrong, I'm not cured yet, and I don't want to expect yet that I will be: but things are looking well in general. While I still have some bad days, the good ones now outperform those. Technically I can't "proof" that the physio provides the fix, but the timeline speaks for itself.

To get to my point: don't think of it as a wild goose chase, just pick your moments where you actually fight for a cure. Between the ENT visits, I took time to habituate as well, since I wanted to be able to think and analyze clearly. I needed to function in life, and so do you.

Hope for a cure, yet be realistic that it might not happen soon: this is still my mindset, even with all the good progress lately. The hope rightfully lifts your spirit, the realism helps in not getting smacked down too much when a battle is lost. It's just one battle after all, the war is much larger: help yourself in choosing when to fight and when to withdraw.

 

[pinklights98]

Thanks, what effect does Botox have on tinnitus?

It may help with TMJ inflammation and also decreasing the nerve response in that area. If money is not a problem, you can also try stem cells.