Feeling Done

[Finnigan]

So not sure how I got this but I don't think I can live with this long term.

The cause for me is likely many fold.

Massive accident/surgery to chest and neck - same side as tinnitus now.

Mom had severe Meniere's disease requiring going through her skull behind her ear and placing tube in ear to drain down the inside of her neck. It worked for the severe vertigo but did not help with ear pressure, balance or noise. She suffered greatly until her death.

I was also exposed to loud sirens and massive stress as a paramedic in Southern California. Along with many communicable diseases such as Tuberculosis which I am now positive for but not active.

Treatment for accident stated above required many drugs, exposed many times to radiation, and massive stress. Died once and intubated several times. No hope for recovery. Dental problems as a result of accident and treatment.

My Dad lost partial hearing due to noise from aircraft.

Severe stress induced TMJ bilaterally but worse on tinnitus side.

So maybe I have both acquired tinnitus and genetic?

First got severe vertigo on train and had sinus problem in 1997. That included vomiting as well but recovery was overnight with no residual ear problems.

2014 after accident while spending an hour looking down at computer, had severe vertigo, vomiting, insanely loud tinnitus and ear pressure which took a year to diminish.

2018 while trying to use my arms in forward position, my chest collapsed (as usual) from now structural defect but this time my left face started twitching and the left side pressure and tinnitus came right after-within minutes

Now I'm lying here in bed after a decent nights sleep and woke up to a freight train in my ear and can't take much more of this.

Significant loss of hearing in that ear at about 80% and I can't hear doorbell or anyone talking unless they are looking at me and I can see what they are saying.

Nothing has worked so far and doctors are useless.

Massage
C8 tapping
Yoga
BP meds
Low salt
No caffeine
Diet change
Sleep
Reduce stress
Valium
Distraction
White noise
Vitamins
Steroids

I feel for ALL of you. This is such an under researched horrific problem.

 

[Finnigan]

I just had to laugh because right after I posted this, we got a tornado watch alert. Like I could hear a tornado coming? Lol WTH?

 

[Bill Bauer]

Are you aware of the possible new treatments for tinnitus that will be released within a couple of months?

 

[Autumnly]

Neuromod, an Irish company, is releasing a new device for tinnitus next year in certain European countries, not sure when it's coming to the US but they are pursuing FDA approval. You can check the thread out here, Steve recently did an interview with them. However, it's not a cure, they made clear that it doesn't help everyone but it could be the first medical treatment for tinnitus.

The University of Michigan is currently doing a trial with a similar device based on bimodal stimulation, I'm not sure if people can still apply to participate. Their Phase 1 trial.

Also, look out for Frequency Therapeutics, they are trying to regenerate hearing. They are currently in Phase 1/2, phase 2 is supposed to start next year.

Significant loss of hearing in that ear at about 80% and I can't hear doorbell or anyone talking unless they are looking at me and I can see what they are saying.

Are you using a hearing aid? It might also reduce the tinnitus.

 

[Finnigan]

Thank you everyone for your replies and fixing my post. I tried fixing it but had some phone issues.

I have been peeking around at all the promising treatments but my case is clinically very difficult due to a lot of missing anatomy and ENTs who won't even take my case because of this. The three ENTs I've gone to weren't helpful at all and just basically confirmed my hearing loss and gave me their condolences on my accident and surgeries. Nevertheless, I'm not very interested in what the medical field has to say about T because they seem to be stabbing at the dark and I'm not interested in being a guinea pig again for anyone. I'm more interested in learning what individual people do on their own to combat this awfulness holistically.

What worries me about procedures is that I don't want to end up like my Mom in that she had major surgery and it only partially helped. She was then again left on her own by the medical community. Incidentally her strokes were on the side of tube placement. Now whether or not that is of any significance is hard to tell.

I try to stay positive and active but this time around kicking my ass.

If there is any ENT anywhere in the U.S. who has experience with anatomical anomalies and tinnitus please let me know.