I Have 12 Months to Recover from Tinnitus: What Treatments Can I Try? Budget $450,000.

My tinnitus is much worse than my hyperacusis. In silence it expands to be a terrible hallucinogenic experience. Definitely cannot tolerate silence right now in any form.

 

Hi linearB.

Can you tell a bit more about your experience with UMich? "I think it worked" doesn't sound too convincing if you'll pardon my brutality. Were you in the placebo group and did you just get the impression that it worked from talking to other participants?

Thanks!

 

It was crossover design, so everyone got both the placebo and real treatment at different times.

They have since published their results which are pretty equivocal. I probably sounded a lot more enthusiastic about the thing when it was closer in mind; my life priorities have changed a lot. If you look at my posts in the UMich Bimodal thread in the Research News subforum, from the timeframe of ~2/1/2016 - 6/1/2016, then you can see what I had to say about it at the time.

No one is a good objective witness of their own life experience, except maybe the Dalai Lama, so "I think it worked" is the strongest statement I can reasonably make. I could tell you I believe that, but, the thing is, I don't see myself as someone who has "beliefs" per se. I have a set of facts I believe to be true, until more data shows me otherwise, and then I have a set of things which I think are true, based on those facts, which are even blurrier. I think having "beliefs" is actually a pretty dangerous thing to do and contrary to a scientific view of the world that's subject to constant self-scrutiny and change in the face of changing information.

Their published data should be a hell of a lot more persuasive than anything I have to say, though

 

Very insightful.

I would add that complicating any conclusions we might make about ourselves is our inability to compare ourselves on a particular treatment with ourselves not on that treatment during the same timeline.

We typically conclude, because of X, therefore Y ("I took this drug, I felt better"), when X might have nothing to do with Y, and the simple passage of time might've been the responsible agent for all we know.

It's the old post hoc ergo propter hoc fallacy, just because something follows something else doesn't mean it was caused by it (although it may appear so).

I keep that in mind as I read this forum. Someone says "I did this thing which caused this other thing to happen." In fact, hard to be sure.

 

We already have a few positive anecdotes about the UoM device, which makes me hopeful for Phase 2 results.

 

I totally agree. Even though in my case I'd had bad tinnitus for a decade and it seemed like a night and day difference... I was pretty careful, as I recall, not to post anything too dramatic until the results of the study were out.

Once it was unblinded, it was clear that not only did I report a subjective improvement in my tinnitus... I actually also experienced an objective decrease in volume, as measured carefully in lab. Also, everyone who seemed to respond to the treatments (which was the majority) showed this correspondence, I believe, between relief and objective volume reduction.

All those caveats aside... Yes, my personal anecdote is subject to placebo bias please read the full texts

 

How long after your tinnitus onset did you start LLLT?

Some people here say it would only be effective if you did LLLT in the the acute phase (that means max 3 months in...)

Thank you!

 

I started under 3 months but it always spiked me so couldn’t continue.

 

Have you experienced any improvement?

 

I’m coping better and the innate sound is *slightly* better. Many days are still straight up suffering however.

 

Bad days/retracements are the norm.

If you are sure that the average volume level of tinnitus these days is lower than it had been two months ago, then most likely your tinnitus will continue to fade and in about two years you will be mostly over it.

 

@GBB, you might give hearing aids a try. I find that slight amplification from a hearing aid, paired with some white noise (also played through the hearing aid) has helped me a great deal. The hearing aids are pretty discreet and don’t block the ear canal, so the inconvenience factor is low.

Note I have a normal audiogram, and so I did not initially think to try hearing aids. I only regret that I didn’t try them sooner than I did.

 

@GBB, are you considering trying stem cells?

I’m in a similar situation to you work wise, I’m supposed to start a quant trading job in August but am unable to work right now...

I have atypical trigeminal neuralgia and occipital neuralgia in addition to tinnitus and so far not much has helped with any of these conditions. I’m considering going for treatment at StemCells21 but am a bit hesitant still about the risk of stem cells.

Wondering what your thoughts are on that?

 

Depending on what country you are in, you may be able to get this. Looks really promising for nerve pain and what's nice is it's topical:

Topical Ambroxol 20% for the Treatment of Classical Trigeminal Neuralgia - A New Option? Initial Clinical Case Observations

 

@FGG, I will check it out, thanks. I’m in the US. Topical is definitely preferable to oral medication as I get pretty bad side effects from meds (and my symptoms were actually caused by medication).

 

Hey - unfortunately I had to pass on my job opportunity - that's just my situation. I hope for you it works out better. I still have a job at a large asset manager but it's shorter hours.

As a quant would you be working around the clock or just market hours? Maybe if it's just 9-5 you can figure out a way to somehow compartmentalize or grind through the day? I know it's easier said than done.

Also Keppra seemed to help with my hyperacusis pain - that is pretty much gone - I'm just left with tinnitus which ranges from debilitating to highly annoying.

 

Gotcha, sorry to hear that about your job. It would be 7-7ish but I’m in too much pain right now to get much work done at all.

I was more so curious about your opinion on stem cells and if you’ve tried it, since you’re able to afford the cost. IMO seems like it could be helpful but could also be risky - low sample size on this forum and elsewhere.

 

Are you still on Keppra? I am glad at least something helped. What dose were you on?

 

I haven't tried it but it's on my list. Sort of waiting to see how things play out re FX-322.

 

@GBB, how did you cure your tinnitus the first time?

 

I am still on 1000 mg broken up into 500 mg 2x per day.

 

How is the Keppra going for you? Thinking about convincing my doctor for a script.

 

@GBB:

You can even buy the lasers that Amon Kaiser uses:
ASA LAser M6 and ASA Laser MPhi8.

ASA offers them themselves and also Amon Kaiser offers them for sale on their website.

 

It went away over 2-3 years by itself. It was caused by plates slamming down at the gym after a cable breaking.

 

Don't underestimate your ability to push through the challenges of a pressurized job.

I'll keep it short but I had essentially the same issue as you in that I was on the cusp of being offered a life-changing role (though lower stakes than your gig, I admit) when I first started suffering from tinnitus. Became suicidal, got hospitalised, AD's, saw a psych and told her my worries, which were about not being able to hold down the job I was going for.

She basically told me to take the offer, come what may. Took her advice, got offered the job, did just fine to the point that I got promoted within a few months and my tinnitus is still keeping me company every hour of the fucking day.

Good luck. You can do it... most probably.

 

@GBB, did you eventually take the job? Just saw that this thread was posted a year ago.

 

Tinnitus is largely about stress management. But the more you try to simplify or reduce your life responsibility the more you fall back to having to wrestle with the tinnitus. So keeping busy is an escape from tinnitus stress, even if what you're doing is in itself stressful. So the trick is to try to view your work as not so much stress as a healthy challenge. Not all jobs make that easy. Also note that not having a job is a source of stress insofar as threatening financial security and damaging the ego.

Bottom line is that you can't really escape from life. You have to find a way to muddle through.

 

How on earth can you "push through" a demanding job with ringing in your ears? Working with numbers or as a wordsmith, you have to be spot on. It requires huge focus and clarity of thought.

I don't get it, but maybe it's because I couldn't survive that environment pre-tinnitus.

 

I guess it all depends on the degree of habituation. Some are so habituated that it has no impact at all on the cognitive function.

I have severely reactive tinnitus, so I have to wear hearing protection literally 24/7 and hear this symphony on maximum unmasked level. Having done so for 7 months, I'm habituated. I've written many thousands of lines of code, and it requires some concentration. My main problem is to not get permanently worse from everyday business, but that's another issue.

So yeah, I think one can push though, given enough habituation have set in.

I'd probably still be cautious not to have duties that can risk others lives though.

Stacken

 

I am a PhD researcher in biology with an editorial role in a prominent science journal.

Oddly, since gaining tinnitus earlier this year, I feel better at what I do at my job in all ways, and it does not seem coincidental to me at all. I think dealing with tinnitus forced me to operate in a less emotion-centered way, just in order to cope with the symptoms, and that practice ironically also enabled me to become a better researcher and communicator.