Long-Term Disability Possible for Tinnitus?

[dj_newark]

Hey All,


First time posting here. I've had Tinnitus for 23 years at this point. I have high faith in the work being done by UT Dallas regarding this disease. I hope to take part in their trials this fall.

But my condition is now so advanced that it's almost impossible to function. It's full head, sounds like a whooshing combined with a disturbingly / rapidly modulating thin whistle at maximum volume. I work as a UNIX admin and have worked on some really big and highly recognizable websites. But at this level it makes my work almost impossible to do. I recently made a mistake so catastrophic that it caused my dismissal. Yet another job lost due to this astounding case of T.

It was very nice of my last employer to carry my insurance through the end of the year so I would not have to pay for COBRA. But my question now is this: I am now convinced that I cannot function in society and work effectively due the nature of my Tinnitus. So what I want to know is would anyone think it's possible for me to use my insurance benefits to get disability payments long enough for me to participate in the trials this November?

 

[Steve]

Hi dj_newark,

Not sure about the insurance, sorry. Reading your symptoms it sounds like you may have pulsatile tinnitus; you may have already explored this but if not it's worth looking into it as it may be able to be treated if that's what it is.

Have a look here http://whooshers.com for some more info on it.

 

[Karen]

dj_newark,
I don't know the answer to your question about insurance, either. Is there a way you could (discreetly) contact your insurance provider and try to find out? Or look at the insurance provider's website for information?

I certainly sympathize with you regarding your condition. I'm a "whoosher", too, since 2010. I've had a lot of tests, and haven't been able to find any physical problems to date. But I do know that the combination of the whooshing/pulsating, plus the high-pitched ringing can drive you crazy, and can also make it difficult to function. Mine has somewhat improved, and I am working 30 hours per week. That has so far been very workable for me.

I'd like to know more about the trials at UT Dallas. What sort of trials are they? Are they testing a new drug, or a new type of procedure?

 

[dj_newark]

Hi

Thanks both of you for your feedback. I'll check out the whooshers site, but the high pitched pulsatile ringing is far more prevalent and more of a problem for me. But I'll see what I can find out there. It seems very interesting and of course I do want my 'whooshing' to be gone too.

I'll check out my insurance providers site and I may call them. I really do want to find out more about that because I think I really will need it. It's so difficult to work with all this going on in your own head.

I can't post links yet, but you can google 'UT Dallas Tinnitus'

It's a vagus nerve stimulation approach. It's the only really promising treatment I've seen. They've had a 10 person trial in Belgium in 2012 and the results were very positive. They're claiming that they've 'found the cure for tinnitus'. Lets hope they're right about that! They're planning a trial of 60 people here in the US this coming fall.

Another thing that concerns me about this disease (other than how it affects sleep and work, two relatively important aspects of life) is that it causes me to be visibly distressed. People do not understand why this is and become dismissive or even hostile. As if what's going on is my fault. GREAT! I get to suffer and also to be blamed for it. Love the compassion of humanity.
Good luck with your Tinnitus as well!

 

[Karen]

Hi, dj_newark, and thanks for the information about the UT Dallas study. I'll check it out. I'm in the U.S., in the Atlanta, Georgia area, so probably can't participate in the study, but it's still good to know that there are promising treatments being tested out there.

Yes, I agree that one of the worst parts of this condition is that we're feeling fear and distress, and no one can understand that unless they are a fellow sufferer. That's why it's good to come here; everyone else understands what each of us is going through. It's an invisible torture sometimes, isn't it?

It sounds as if your high-pitched ringing is the most bothersome aspect of your tinnitus. Is it in one ear or both? And do you have some hearing loss?

 

[dj_newark]

Hi Karen,

Actually as to the UT Dallas study it's being handled by a spinoff company called Microtransponder. For some good info on what's going on with their trials. You can look up Will Rosellini's blog where he's talks about what's going on with the trials. Also they plan multiple sites throughout the US. So I would be surprised if Atlanta were not represented in their studies. So keep an eye on both the Will Rosellini blog as well as the Microtransponder site. Good luck to you if you want to participate.

Just be aware that the trials require the surgical implantation of a small VNS device in the upper chest. This is what delivers the electric pulse to your brain via the vagus nerve. The pulses coincide with tones one will listen to through headphones. It's this process that essentially 'rewires' the brain into not producing the phantom noise that constitutes tinnitus. So if you're cool with that I say GO FOR IT! It's reported to be potent and has worked with even severe cases in their study in Belgium.

And you're right. It's an invisible torture that no one can see, or understand and that brings judgement and condescension and even hostility from those who can't imagine what this experience is like. I swear to god my T is really all I can perceive most times. Unbearably loud, high pitched like a dentists drill and pulsatile in addition to the less prominent 'whooshing'. I actually perceive the high pitched sound in my HEAD not my ears unfortunately. But it appears to emanate near them.

I fear it's already driven me insane and impaired not only my ability to sleep but also to THINK which is a rather important aspect of my (or anyone's) JOB. And if I can't perform my job, that I've worked so hard to establish myself in, then of what use am I to the world? Isn't the purpose of business to serve others? Isn't this a 'what can you do for me?' world? And if you can't provide anyone with valuable service, then you are TOAST. The weak die, period. End of story.

I'm on the job hunt now and sadly for me I interview well. The question is, do I take a job knowing that I will unlikely be able to perform it given my rather noticeable disability? That's why I really need to find out from my insurance provider if they'll give me disability coverage for 6 months or so until the Microtransponder trials become available. Otherwise I better be prepared to con some company into believing I can provide valuable service to them for that amount of time. But.. sigh.... if only I could do what my potential new position would require of me!

 

[Uklawyer]

Any updates on this technology? Looks like it is still going, perhaps with some trials still to do.