Repeated Modified Nerve Blocks and Auditory and Non-Auditory Nerve Stimulation

Please keep all of us posted on your treatment.

 

Good luck, Bryson! We're all cheering for you.

 

Was it easy to find a place to stay? Expensive?

 

Airbnb ~$1700
Flight ~$1100

 

Not bad.

 

Thank you for thinking of us and posting your experience for us to follow. I sincerely hope this works for you; I will consider it if I continue to hear good results about it.

 

Ah BrysonKingMe,

It cheers me to read in your Avatar that you also are pretty much an old fox -- (2016) tinnitus-wise, I mean. So if it works for you then there is the off-chance that it might help me (Easter 1992 when I first heard this strange high-pitched noise in the early morning).

 

What's crazy is how it used to almost relax me hearing it, cuz it was just a pretty stable hiss for so long.

What I'm having an *extremely* hard time getting used to is every other day I get these extreme fluctuations where it changes hourly and is wayy louder and so shrill.

One of us had to do it!

 

What is muscular tinnitus? What kind of surgery did you have and did it help?

 

Hi, yes, it is called Middle Ear Myoclonus. There is a lot of detail on my surgery in the Pulsatile Tinnitus category here:

Pulsatile Tinnitus Gone After Tenotomy of Middle Ear Muscles

 

Good luck, bro.

Looking forward to your good news!

 

A frequent lament among posters here, there and everywhere is the length of time it takes for a new therapy to become available. Usually the phases of development are:

1) Someone in medical/ENT practice or academia gets a concept or idea.
2) They produce their 3D models or computer models of the contraption, the molecule, procedure or whatever.
3) The testing in petri dishes, test tubes, then on animals.
4) The testing for safety on young healthy robust human volunteers.
5) Testing on patients.

At the moment on the Research News threads there appears to be ten, twenty, thirty or more possible remedies put forward... but they all take time.

I was just wondering if there could be any way of shortening the procedure.

Well, if some genius scientist can come up with a method of viewing the workings of the inner ear in vivo that would open up a range of possibilities.

The example of BrysonKingMe setting sail from Denver to the distant shores of Korea, maybe to be followed by Bob the German chap has me disposed towards the view that they are doing precisely that -- they are shortening the procedure.

So if, say for example, a set of twelve of us -- all who have similar types of tinnitus, for example "chronic, noise-induced, high-pitched" were to venture off to do some therapy double-blind to get it as scientific as possible and, let's say of the original number of 12, that ten came back greatly relieved of their tinnitus -- it might not be a fully statistically conclusive QED test but it might be an indicator that the therapy deserves further attention and that the developer of the theory is on the right path. Of course if only 6 out of 12 came back greatly relieved... you could flip a coin and then decide whether to follow down that route.



I admit that this idea may be just bull. But it might have some merit. After all, we are awaiting the return of Mr. BrysonKingMe with great anticipation.

 

@Joeseph Stope, that is a masterful idea. 10 or 12 of us could go try the treatment. We could fill out our own questionnaires and track improvement over course of treatment and after.

If Dr. Susan Shore put out a Twitter or a message on here saying e.g., 80% of people had a 90%+ reduction in their tinnitus, I'd go and steal one of her devices and some instructions on how to administer treatment - or beg for her to start on me. Sign whatever waiver of liability she wants. I don't see why helping in this way (call it compassionate expedited use or follow-up validation trial) is unethical at all. I'd rather that than wait for a formal paper to be published in a journal and the licensing, registration and commercialisation to occur.

They did it with coronavirus. Shame it wasn't the contagious tinnitus virus (ironic as COVID-19 or the vaccine can leave you with tinnitus).

 

Kind of like the idea as well. My tinnitus is really bad at the moment.

@Uklawyer, any update from the person that you had contact with? He must be closer to 10 treatments by now if he continued.

 

@David S, I know it's all relative, but mine is bad too - especially with now having coronavirus along with it (and various other cormorbidities). I am too tired for humour at the moment.

The person will be doing treatment number 13 tomorrow I believe. I have had brief contact with them. I know that the doctor(s) want to continue with treatment. Can't say much more but will ask if I can provide anything further when I next speak to them.

 

Hello all,

Just wondering about this plane ride -- I'm going to download a couple of tracks for masking in case I wake up and it's a rough day (my luck it will be).

This is one of the only things that completely masks it:

Tinnitus Zapper 13kHz Focused High Frequency Noise

I also have a few cricket tracks that I'll need to download.

Gonna be using ANC headphones. My tinnitus is super reactive on the bad days, so if I don't use them, I'll be hearing my tinnitus over the jet engine for 17 hours.

I have a seat in row 11 so it shouldn't be too noisy.

Anyone else have any tracks that I can download that helps them with high pitched tinnitus?

 

How long do your ANC headphones last? Perhaps download on 2 devices and have another set of headphones or earphones also.

 

A long time, but I also have portable batteries in case it dies.

Should be good. Guess I'm more worried about the flight fucking up my ears more. But I've taken 2 flights since this got bad and it was fine. Just anxious I suppose.

 

For what it is worth, I've flown a ton since my onset and it hasn't made any difference.

 

I've thought about this as well. If the treatment was with a pill, you could even do blinding (e.g., someone from the forum sends out a batch of pills to participants which could either be placebo or the real deal). I think liability would be an issue though - what happens if the treatment causes harm in some way...).

 

Let’s hope we get feedback from 4-5 people in 2-3 month timeframe. We already have the person that @Uklawyer is in contact with. He must be close to 15 treatments now. I find that a little promising and hope for his success!

 

This covers mine as well!

Is your tinnitus in the ears or all around the head?

 

Days like today, in my head. Like an electrical wire has been jammed in it. It's not particularly loud all the time, but reacts to everything. Other days it's extremely quiet and tonal and I don't even notice it

Basically a day of what I had before this second acoustic trauma in January (mild) and then followed by 1-3 days of an irregular electrical hiss that changes every hour. It can get extremely debilitating.

 

I know where you're coming from.

I've just come off two days of misery and it's semi reasonable today. I know during the night tonight it's going to ramp up for another 2 days of torture. And the cycle goes on and on.

 

Sometimes I can sleep on a good day for like 20 minutes and make it a bad day. Then the next day it will be good too. But that's not very sustainable.

 

Your tinnitus sounds a lot like mine, so I’m eager to see how the treatment works for you. We’re all rooting for you and hoping for positive results.

Does your tinnitus cause you sensations of physical pain? Mine feels like electrical currents and electrical discharges, in the form of zaps, and it literally hurts often. So it’s maddening because it’s not just a sound, it’s a feeling, too. If it were just a sound, I’d honestly feel like I’d be okay with it. But it’s just too hard and unreasonable to get used to the constant “electricity shocking me”aspect of it. It’s like someone’s holding a taser to the side of my head. How the F can you habituate to that?

 

I get the zapping sensations, but it doesn't cause me any pain. It's extremely shrill though.

I could perhaps habituate to this, it would take a long time though.

 

Do you have hyperacusis at all, @BrysonKingMe?

 

No, some sounds are uncomfortable though and the tinnitus is reactive.

 

Uhh just a heads up for anyone thinking of doing this, and is prescribed a controlled substance. I just found out Klonopin is prohibited from entry without a narcotics permit issued by the Korean FDA, even though doctors will prescribe you it if you bring your US script.

I found about this yesterday, the process takes 10 business days to get an answer on the permit.

I don't have time for that since I leave tomorrow morning, so I'm going to bring them anyway, because at this point I'm physically dependent on them and withdrawal will for sure make my tinnitus worse.

According to a few people I've spoken to, they don't bat an eye at pill bottles at customs (unless you are bringing in a metric f-ton).

I'm contacting a bunch of doctors in Korea frantically trying to make an appointment in case they don't let them in. The tinnitus clinic I'm going to will prescribe them, but I can't wait 3 days to get them.

Lovely!