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

I am in a high-pressure technical position for a Fortune 50 company. I am running again, I meditate - something I have never done before. The key to me seems to be to get a good nights sleep. So yeah I in some ways tinnitus is forcing me to make healthier choices. I still have days where I where I don't sleep well and struggle a lot though. But I cope.

 

@GBB, I noticed you tried many possible solutions. Can you please list them and advise what has worked for you?

 

@GBB, hope you’re getting by with at least some improvement these days.

 

How are you doing now?

 

I am on Keppra/Lamictal and Pramipexole now. I've regained a lot of agency (I can shower and drive for short bursts, and listen to tv/music without any concern at all). House fans still seem to trigger spikes for me.

Lamictal in particular seemed help.

Still debating if I can take more demanding jobs but many days are more enjoyable now.

Sleep remains a hard aspect to manage as I still need drugs (Mirtazapine) and I hate being woken up by my tinnitus every single morning, and often require afternoon naps, which are also shallow in quality due to the noise.

 

Are you still on Nortriptyline as well?

 

No, I dropped that. It didn't seem to have any effect for me.

 

Did you end up going to StemCells21? I also have pain hyperacusis plus tinnitus and am probably going to go to StemCells21 as soon as I recover a little from this current setback.

 

I didn't find any effect from it either but am starting it again now just because I'm going through a bad setback.

What did you make of the peptides you tried in the past?

 

None helped unfortunately - I can’t recommend them.

 

@GBB, you say you can listen to music and TV now. How long, from onset, were you able to do this?

Also, did your sound distortions subside? Does music sound ok?

 

I've been taking BPC-157 and TB-500 orally for 3 or 4 days now and haven't noticed anything except my ankle injury being better. I ordered Epithalan, Pinealon, Semax and P21 to try out too. I don't have high hopes for them to be honest.

Actually the pain in my ear is a lot better now but it was getting better normally anyway so it's very hard to tell if the peptides helped or not. I do think there's a good chance the BPC-157 and TB-500 could help with my TTTS since that's partly a muscle issue. And maybe that's what was causing some of the pain too.

 

Those are not your two options -- get this high paid job - or go drug yourself in a tiny home.

You should choose the middle route, you will try to do this job, if you can't, you will adapt and do some other job that works for you and you will be alright either way, you are never going to drug yourself to deal.

Also, don't spend money on tinnitus, it won't help. Maybe a few hundred or thousand, but in general you need to accept and move on and get healthy.

 

The post you are replying to is 2 years old.

 

Any improvement in your tinnitus from the other supplements?

 

It's mostly the same really so far, but the supplements are making my mood way better, kind of like a mild antidepressant, so I'm coping very well. I still hear the tinnitus but am just less bothered by it most of the time.

Not being stressed out means the tinnitus doesn't spiral out of control.

My tinnitus varies massively even on its own, so it's very hard to say if something is working.

A lot of the supplements I'm taking can take up to a month to take effect so it's still too early to tell. I might be taking too much at once as well but not sure how to go about it.

Also, some of the supplements I'm taking increase my focus massively so that helps me keep distracted from the tinnitus.

If it doesn't get louder, I can probably deal with it fine. Need to avoid the ear pain which is more difficult for me.

 

Hey @GBB. I caught up with your story, so sorry man. Heartbreaking.

I know you returned to remote work 2 years ago, and holding it together. How are you now? Have you managed to get any improvement? Still using Keppra and/or Pramipexole?

 

@GBB, were you 100% cured the first time you had tinnitus? Did you ever end up trying HBOT the second time around?

 

I have this exact same thing!

It's one of the first times I've seen it come across here on Tinnitus Talk. For me the sound is more like a light sabre, but when I look left or right, that light sabre is now swooshing through the air (faster and louder).

It's not there all the time but probably more so when I am very tired.

Do you still have this?

I have been getting eye lid spasms, and spasms around my eyes, throat and chest. I assume these spasms contribute to this effect, but I haven't seen many case studies of it.

 

Absolutely true.

All you need to know:

1) Tinnitus rarely goes away
2) Stress is major contributor or exacerbator
3) Nobody has a cure
4) Your perception of it gets better with time

 

A brain implant.

 

1) Correct, it rarely goes away, and usually gets worse over time.
2) Stress / anxiety makes no difference for some of us on tinnitus intensity.
3) Correct. But there may be a treatment available (the Dr. Shore device) within a year or two that provides 6 dB or more reduction.
4) I perceive it as worse over time because it has gotten worse over more than 20 years.

 

I'm not sure mine could be any louder, but the amount of distress it causes me has decreased a lot over the years. I just surrendered to it and stopped caring. I've had it about 9 years now, and the first 6 were pretty bad, for sure. I know a number of people now that have it and they all say pretty much the same thing. What is amazing is how many people have it, but don't post on the internet.

 

There is nothing that says it usually gets worse.

 

Well, not too amazing. I was one of those people who had it for 20 years before I ever posted. Most cases are mild, as mine used to be, and various family members and friends I've talked to. But over time, it usually just gets worse and worse until it causes distress when it gets bad enough, whether or not I'm thinking about it. Most people's will remain much more mild, despite worsening over time, so they won't bother posting, as I never used to.

 

It is rife. A good proportion of my students have it with a few of them having a bad case. The worst ones I know of currently have a history of going to loads of gigs. What I find fascinating is that they still go to loud concerts. One of them recently told me that he couldn't hear properly for 5 days following a gig about a year ago, and then in the next breath said he’s got another of his favourite bands booked for next month! It blows my mind. I asked him about his tinnitus and he said it's pretty deafening, and what he described sounded like a severe case. I'd say he's gotta be in his 60s. Another of the bad cases I've spoken to is a bin lorry driver.

I first noticed my tinnitus when I was around 18 or so, so that would have been around the year 2000 or so. In my case, I habituated in a matter of weeks, but I still remember reading guitar magazines and hearing the ringing and wondering if this will ever go away. Then I remember thinking, when Chris Martin spoke about his tinnitus in the media years later, yea, I've still got that. I've talked about this on here before.

Then, when I was about 32, in 2015, mine suddenly became severe and it destroyed my life. It made me quit my band, and I became really down and depressed. However, over the course of time, I found myself largely ignoring it again. This is no guarantee of how everyone else should react to their tinnitus, but it seems to be by far the most common outcome for the vast majority of people.

 

How long did it take for you to start ignoring tinnitus? And do you live a normal life now? Can you go to gigs with hearing protection and sports events and such?

 

Extremely sad, but true.

 

It's a difficult process as there are days where you think you're finally moving on, and then the next day is a catastrophe. This seems to repeat many, many, many times over; it's a ridiculous back-and-forth minefield. I also had lots of setbacks from instances of trauma, and looking back, it's near impossible to separate real traumatic events (such as an MRI scan I had) from psychological ones where the spike is almost certainly caused by the fear and anxiety of an event happening (such as a kid screaming nearby, or dropping a plate on a hard floor, etc).

The short of it is that there appears to be no defined timeline. Everyone needs to go through their own process that involves grieving your loss of silence (and livelihood in a lot of cases).

I think 3 years is a good starting point, but the longer it goes on, the more resilient you are most likely to become. My tinnitus hasn’t changed, but for most of the day, I don’t pay attention to it in the slightest. In other words, it has no impact on me at all. This doesn’t mean I’m totally out of the woods, however, as there’s always that lingering risk that something could mess my ears up again and set me back to square one.

 

I would say tinnitus rarely goes away for those of us who are on this website for a long time because there are millions of people attending loud events (concerts, sporting events, ...) who get short-lived tinnitus. They are lucky that it goes away for them.

I have also seen many people who, no matter what they do, never end up with tinnitus! And those people never join us here!