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

[dan]

I can barely function - I am eking out each day as is... aside from not being able to speak on the phone because it makes my ringing go crazy and hurt my ears, my laptop fan sounds like a piercing tone, and the tinnitus itself means I am getting 3-4 hours of sleep in spite of mirtazapine and melatonin.

I was going to say maybe I am just weak-willed but that is not the case - this shit is an affliction and very severe. I am completely unsure of what my future entails in any meaningful sense.

For starters, buy a fanless laptop.

 

[spedgas]

Give yourself time. Recovery takes time.

I'm just over two years in and I wish the me from when tinnitus started could see me now. I'm eager to see where I'll be in two years from now. I've been through the ringer with this. I spent entire days in the fetal position regularly for the first six months. I lost 40 pounds in three months from not eating or taking care of myself. At my lowest I spent five days in a lockdown mental health facility just so my kids wouldn't have to deal with my planned suicide. Now I have days where I don't hear tinnitus unless I go looking for it. I still have bad days mixed with the good. I quit my six figure dream job and found another I was more comfortable in that pays the same.

I realize you have a decision to make about your career, but this imposed year deadline is only causing you more stress. Controlling stress is important to tinnitus management. Over time chances are you'll reach some level of improvement/habituation that makes life at least tolerable.

 

[ehrfried]

Thanks very much and congratulations! May I ask how long you had tinnitus for, and for how long you were treated? For me this topic is as serious as my life, so I appreciate the info.

Thank you! I wish you, and all here, the very same.

Right now I am very busy, sorry, but I will post you everything I have and know as soon as possible - within the next few days.

Things will improve, my friend and you are in a very lucky situation from the following aspects: Tinnitus is fresh, budget, age.

How is your overall health by the way? Are you fit?

Mine was induced by noise originally. It was a club in 2008.
I was 17 back then.
it took until 2016-2017 until it was almost gone, and then gradually further improved when I didn't really care anymore.

 

[Eric N]

Money cannot save you from tinnitus. Don't forget that there are celebrities worth hundreds of millions of dollars and they haven't found the solution. If anybody could make a major change it's these people and it baffles me why they don't do more.

 

[GBB]

Thank you! I wish you, and all here, the very same.

Right now I am very busy, sorry, but I will post you everything I have and know as soon as possible - within the next few days.

Things will improve, my friend and you are in a very lucky situation from the following aspects: Tinnitus is fresh, budget, age.

How is your overall health by the way? Are you fit?

Mine was induced by noise originally. It was a club in 2008.
I was 17 back then.
it took until 2016-2017 until it was almost gone, and then gradually further improved when I didn't really care anymore.

Thanks! Overall health was good before this - last couple months have been rough. I am still generally fit though.

 

[Jrblovsky]

I feel for you. I hope relief is found. Tinnitus has caused me so much grief and despair. I just want my old life back. My tinnitus is unilateral but extreme. Let me know if you find something that helps.

 

[DebInAustralia]

Ideas:

. Nicotinamide Riboside - might be useful for auditory damage

. Consider anything that reduces TNF Alpha (cytokine) associated with neuro inflammation secondary to hearing loss, such as high dose Curcumin ie., 3g/ day with Piperine, Low-Dose Naltrexone, Steroids - good for an experiment, but not safe long term. An alternative to this may be a Chinese herbal formula called Phytocort, which has compatible effects to steroids, and Resveratrol is another TNF inhibitor.

 

[Juan]

I gotta find something to help. It isn't an option for me - it either eventually gets softer/more bearable or I will not last. It is so high pitched and reactive, literally every day has been a profound level of suffering. You may be right, but I pray to god with every fiber of my being you are not.

One thing that alters my hearing perception, and also tinnitus and hyperacusis, is exercise. Try running or cycling and see how your ears react.

 

[ehrfried]

Thanks! Overall health was good before this - last couple months have been rough. I am still generally fit though.

This is good to hear!

I hope this summary helps many people.

I am sorry that this is in German, but I hope you find a good solution to translate it. I can recommend for example deepl.com - it can translate whole Word documents at once.

I started writing this in 2015 and this contains all my experiences during my journey, including knowledge gained from conversations with other people on the Internet and in real world.

Best wishes,
ehrfried

 

[DebInAustralia]

Thanks! Are there any other treatments you would recommend? I'm already taking supplements like NR/NMD, curcumin etc... if it's been mentioned here I'm probably taking it.

In case you have cochlear/brain inflammation, consider low dose naltrexone.

 

[GBB]

This is good to hear!

I hope this summary helps many people.

I am sorry that this is in German, but I hope you find a good solution to translate it. I can recommend for example deepl.com - it can translate whole Word documents at once.

I started writing this in 2015 and this contains all my experiences during my journey, including knowledge gained from conversations with other people on the Internet and in real world.

Best wishes,
ehrfried

Much appreciated, I'll figure out a way to translate.

 

[friend74]

This is good to hear!

I hope this summary helps many people.

I am sorry that this is in German, but I hope you find a good solution to translate it. I can recommend for example deepl.com - it can translate whole Word documents at once.

I started writing this in 2015 and this contains all my experiences during my journey, including knowledge gained from conversations with other people on the Internet and in real world.

Best wishes,
ehrfried

Dr. Wilden is a scammer and wearing ear plugs the whole day (if possible) will give you a nice hyperacusis...

 

[Jack V]

Hi GBB,

Here's a bit of what I've learned, if helpful.

There are some things you can do which MAY help.

"May" because there's no way for people to compare their own results with what would've happened had they gone down a different path, and it may be that time is the best (and only) thing that works, when it works, and everything else is smoke and mirrors.

That said, if you have the budget...

First, there are a few things that are time sensitive, and supported by some research. I would do them immediately.

First is HBOT. Find a place that is able to provide sufficient pressure levels (noted in tinnitus studies), and arrange a series of sessions. You're on the tail end of what's been identified as a useful window, but I would still do it if I were you and ASAP.

Second is intratympanic steroid injections. ENTs often administer this in a series (say, 4).

Third is put together a team.

The forum is helpful up to a point, but no one here is your doctor treating you. "Team" because there is more than one discipline that might be helpful - an ENT you might initially see might specialize in handling acute trauma, whereas a neurotologist specializing in long term treatment will have different expertise. An audiologist specializing in tinnitus would be able to help in different ways still, including, for example, in the use of hearing aids tweaked to relieve tinnitus.

Frankly, from what you've said, it doesn't sound like you've been to any doctor who specializes in tinnitus, and they've all been dismissive. That's a common complaint. However, there are tinnitus specialists out there who won't be dismissive, you just have to find them.

Even though there's no guarantee all the kings horses and all the kings men can put Humpty back together again, they might be able to at least make Humpty feel a little bit better.

Therefore, if I were you, I'd research the field and find the experts in your neck of the woods. I've found that identifying one expert leads to additional experts, and with some work you can find the "good ones." If you have no clue where to start, I'd take a look at major medical universities and teaching hospitals near where you live, or talk to an ENT about a referral to someone they would consider an expert.

Finally, I'd be wary of snake oil and those who pedal it.

Good luck!

 

[GBB]

Hi GBB,

Here's a bit of what I've learned, if helpful.

There are some things you can do which MAY help.

"May" because there's no way for people to compare their own results with what would've happened had they gone down a different path, and it may be that time is the best (and only) thing that works, when it works, and everything else is smoke and mirrors.

That said, if you have the budget...

First, there are a few things that are time sensitive, and supported by some research. I would do them immediately.

First is HBOT. Find a place that is able to provide sufficient pressure levels (noted in tinnitus studies), and arrange a series of sessions. You're on the tail end of what's been identified as a useful window, but I would still do it if I were you and ASAP.

Second is intratympanic steroid injections. ENTs often administer this in a series (say, 4).

Third is put together a team.

The forum is helpful up to a point, but no one here is your doctor treating you. "Team" because there is more than one discipline that might be helpful - an ENT you might initially see might specialize in handling acute trauma, whereas a neurotologist specializing in long term treatment will have different expertise. An audiologist specializing in tinnitus would be able to help in different ways still, including, for example, in the use of hearing aids tweaked to relieve tinnitus.

Frankly, from what you've said, it doesn't sound like you've been to any doctor who specializes in tinnitus, and they've all been dismissive. That's a common complaint. However, there are tinnitus specialists out there who won't be dismissive, you just have to find them.

Even though there's no guarantee all the kings horses and all the kings men can put Humpty back together again, they might be able to at least make Humpty feel a little bit better.

Therefore, if I were you, I'd research the field and find the experts in your neck of the woods. I've found that identifying one expert leads to additional experts, and with some work you can find the "good ones." If you have no clue where to start, I'd take a look at major medical universities and teaching hospitals near where you live, or talk to an ENT about a referral to someone they would consider an expert.

Finally, I'd be wary of snake oil and those who pedal it.

Good luck!

Thanks! I did schedule an appointment with a Yale ENT who self identifies as a specialist in tinnitus. You are correct that I've seen many doctors but no tinnitus specialists as such.

I will also try to do some HBOT just in case it is helpful! Every ENT I've seen has refused to do injections unfortunately, so I think that is beyond me at this point.

 

[ehrfried]

Dr. Wilden is a scammer and wearing ear plugs the whole day (if possible) will give you a nice hyperacusis...

You can think about Dr. Wilden whatever you want, but I now want to refer to your last sentence, which is plain wrong.

You do not get hyperacusis from avoiding noise exposure in a similar way as you do not get any permanent oversensitivity to light when remaining in the dark for hours.

Nerves just do not work this way.

I cannot believe how people still believe that the inner ear "needs" noise.


Just a metaphor:
If you break your arm for example, would you continue using it or would you give it a rest so that it can heal?

And even if your fear for acquiring hyperacusis is so high, then why could you not revert this effect by exposing yourself to noise again?

This just lacks any logic, from any point of view.

 

[Jack V]

Thanks! I did schedule an appointment with a Yale ENT who self identifies as a specialist in tinnitus. You are correct that I've seen many doctors but no tinnitus specialists as such.

I will also try to do some HBOT just in case it is helpful! Every ENT I've seen has refused to do injections unfortunately, so I think that is beyond me at this point.

That's great news about the Yale ENT.

Regarding HBOT, there's 3 general types.

First is salon style HBOT, offered along with beauty treatments, which don't necessarily go to the pressures you'd want. Second, there are these independent HBOT "shops" that provide HBOT to patients, typically with individual, solid tubes that provide sufficient pressure. These are the ones I'd look for. Finally, there is hospital-based HBOT which is likely not what you'd want because even with your budget, it'd likely be too expensive (you have to pay hospital and related fees which are very high and typically not reimbursable with a tinnitus diagnosis).

While there's no definitive proof HBOT works, the underlying science is solid, it's well established for wound healing, and there's some indication it might help with tinnitus within the first several months. However, the research suggests you'd need to complete a certain number of treatments to benefit from it.

Regarding injections, for what it's worth, my experience is different, and of course I don't know the details of your particular circumstances. I went to several ENTs with experience treating tinnitus, and pretty much all of them offered injections. I even asked one, "what would you do if it were you?" and they replied "that's not a question I'm supposed to answer but... I would do them."

That said, like HBOT, there's no definitive proof they work, only that they seem to help SOME people SOME of the time.

 

[GBB]

That's great news about the Yale ENT.

Regarding HBOT, there's 3 general types.

First is salon style HBOT, offered along with beauty treatments, which don't necessarily go to the pressures you'd want. Second, there are these independent HBOT "shops" that provide HBOT to patients, typically with individual, solid tubes that provide sufficient pressure. These are the ones I'd look for. Finally, there is hospital-based HBOT which is likely not what you'd want because even with your budget, it'd likely be too expensive (you have to pay hospital and related fees which are very high and typically not reimbursable with a tinnitus diagnosis).

While there's no definitive proof HBOT works, the underlying science is solid, it's well established for wound healing, and there's some indication it might help with tinnitus within the first several months. However, the research suggests you'd need to complete a certain number of treatments to benefit from it.

Regarding injections, for what it's worth, my experience is different, and of course I don't know the details of your particular circumstances. I went to several ENTs with experience treating tinnitus, and pretty much all of them offered injections. I even asked one, "what would you do if it were you?" and they replied "that's not a question I'm supposed to answer but... I would do them."

That said, like HBOT, there's no definitive proof they work, only that they seem to help SOME people SOME of the time.

Thanks, can I ask you if you had an injection? If not, no worries - I appreciate it is a sound recommendation regardless, but just curious on your personal experience. I am two months out now so not sure if I am still in the therapeutic window.

 

[GBB]

Just to give an update - I think something in my ears is loose or sensitive. Every time I drive even for 15 minutes at a time, my ears gets a full feeling. After that my distortion and tinnitus pick up. For example this morning I had near silence for 15 minutes, then had to go and pick up a prescription by driving to the pharmacy, and when I got back my ears were hearing a squeaky distortion on the wind which NEVER happens and my tinnitus was very loud indoors.

Obviously I should avoid driving moving forward but how fragile am I and what is happening? The only thing I can think of is nerve synapses breaking or detaching - driving shouldn't cause irritation to hair cells, right? The car isn't loud, but there seems to be a very mechanical or reactive component at play, and it's so, so scary.

Does anyone have any idea what this could be?

 

[GBB]

Just to give an update - I think something in my ears is loose or sensitive. Every time I drive even for 15 minutes at a time, my ears gets a full feeling. After that my distortion and tinnitus pick up. For example this morning I had near silence for 15 minutes, then had to go and pick up a prescription by driving to the pharmacy, and when I got back my ears were hearing a squeaky distortion on the wind which NEVER happens and my tinnitus was very loud indoors.

Obviously I should avoid driving moving forward but how fragile am I and what is happening? The only thing I can think of is nerve synapses breaking or detaching - driving shouldn't cause irritation to hair cells, right? The car isn't loud, but there seems to be a very mechanical or reactive component at play, and it's so, so scary.

Does anyone have any idea what this could be?

@FGG can I selfishly ask for your opinion on this? I've got no idea how driving for 15 minutes could cause ear fullness and increased distortion / tinnitus. I know if I ask an ENT they'll just shrug their shoulders at me. My best guess is microsuction destroyed or loosened a bunch of nerves and now they are healing and as delicate as glass. I'm not sure how this is possible, but what else could it be?

 

[FGG]

@FGG can I selfishly ask for your opinion on this? I've got no idea how driving for 15 minutes could cause ear fullness and increased distortion / tinnitus. I know if I ask an ENT they'll just shrug their shoulders at me. My best guess is microsuction destroyed or loosened a bunch of nerves and now they are healing and as delicate as glass. I'm not sure how this is possible, but what else could it be?

I definitely don't think you have "loose nerves" but my opinion is (and I'm not an otologist so I'm glad you have an appointment with one) there are a few possibilities.

A few questions first: what are you normally doing when you aren't driving? Are you doing a lot of sitting or moving around?

Are you dizzy at all?

What kinds of different noise exposure do you have in the car?

Are you driving over hills or having altitude changes on your trip?

Does it always subside? How long does it take?

It's a very good sign that you get near silence already btw.

 

[GBB]

I definitely don't think you have "loose nerves" but my opinion is (and I'm not an otologist so I'm glad you have an appointment with one) there are a few possibilities.

A few questions first: what are you normally doing when you aren't driving? Are you doing a lot of sitting or moving around?

Are you dizzy at all?

What kinds of different noise exposure do you have in the car?

Are you driving over hills or having altitude changes on your trip?

Does it always subside? How long does it take?

It's a very good sign that you get near silence already btw.

Thanks! When I'm in the car there is some noise but I never feel pain or loudness hyperacusis, I've just noticed these last two months it tends to make my ears get that full feeling so many describe, and then later my ringing and distortion increases. Sometimes I also get very mild burning in my inner ear. This usually subsided within 24 hours.

I'm not dizzy, I basically just sit in a chair all day outside because my tinnitus is so bad right now I really can't stay inside. Also there are few if any altitude changes occurring.

Maybe it's a form of hyperacusis? I never get this with anything aside from driving though, so I suspected something mechanical as opposed to sound related. Sorry to ask you, I'm just discovering new fragility every day in my condition and it's honestly terrifying, and no doctor will do or say anything substantive. My ears are screaming right now

 

[FGG]

Thanks! When I'm in the car there is some noise but I never feel pain or loudness hyperacusis, I've just noticed these last two months it tends to make my ears get that full feeling so many describe, and then later my ringing and distortion increases. Sometimes I also get very mild burning in my inner ear. This usually subsided within 24 hours.

I'm not dizzy, I basically just sit in a chair all day outside because my tinnitus is so bad right now I really can't stay inside. Also there are few if any altitude changes occurring.

Maybe it's a form of hyperacusis? I never get this with anything aside from driving though, so I suspected something mechanical as opposed to sound related. Sorry to ask you, I'm just discovering new fragility every day in my condition and it's honestly terrifying, and no doctor will do or say anything substantive. My ears are screaming right now

Off hand, it sounds like one of two possibilities: you have reactive tinnitus that may be reacting to specific sounds (like your car engine, etc) and some degree of hyperacusis (I think the distortions could be a more narrow range loudness hyperacusis making some tones louder than they should be within complex sounds). You seem to have some noxacusis too.

I would protect your ears better in the car for sure and try to get as much delivered as you can while you wait for your ears to settle down a bit.

It's also possible you have something like a perilymph fistula which can happen after pressure injury (or even some noise injury). Sleeping with your head elevated can help tremendously with that if that is what happened.

@Backpacker knows more than anyone here about 3rd window syndromes so maybe she can chime in for the latter.

Again, consider this all gut feeling / speculation.

 

[Jack V]

Thanks, can I ask you if you had an injection? If not, no worries - I appreciate it is a sound recommendation regardless, but just curious on your personal experience. I am two months out now so not sure if I am still in the therapeutic window.

Sure.

Following an earlier course of prednisone, I had a series of 4 injections over a couple weeks and felt some relief after the 4th, although it was only temporary. Or who knows, perhaps I'd be in worse shape without them.

Two months might be pushing it, but perhaps the injections might still be helpful.

The "cutoffs" are general cutoffs, and may not apply in individual cases. I forget what the generally advised window is, but let's say it's 6 weeks. That's based on all sorts of assumptions and generalizations including perhaps what insurance will cover. I'm speculating, I'm not sure, but to continue the speculation, that would be only 14 days from where you are, and you could be someone who would respond very well to it during an extended window (or perhaps not at all even if given early), so I wouldn't necessarily treat the window as dogma.

 

[Juan]

I am 28 years old and I have 12 months to recover to take a high power job in NYC that will pay me $100k more than my current role. Failing that I'll probably move to Florida, buy a tiny house, and eat/drug myself into an early grave. Already taking all the supplements and tried ADs for 7 weeks.

What are some plausible YOLO therapies I can try? Pretty much my whole future on the line. If I don't get better I'd rather burn out than live as the pathetic shell of a person I am now.

Tinnitus is bilateral and noise-induced, 7 weeks old. I will not habituate as tinnitus is too loud.

Budget: $~450k.

By the way, what kind of job do you have to do in NYC?

I mean, how would tinnitus specifically impact that job?

 

[EddieL.]

GBB, what doctor are you seeing at Yale? I'm in the New Haven area, and I've seen an audiologist and otologist there.

 

[GBB]

By the way, what kind of job do you have to do in NYC?

I mean, how would tinnitus specifically impact that job?

I work for an investment bank, and would switch to management consulting. The distortion alone which makes all white noise sound cutting would be the probable game changer. If I just had tinnitus that was not reactive and no distortion, I could probably try to mask and just muddle through. I think my fate really rests on the distortion - I have noticed Xanax seems to lessen the impact but I can't use that reliably.

 

[GBB]

GBB, what doctor are you seeing at Yale? I'm in the New Haven area, and I've seen an audiologist and otologist there.

It's a Dr. Hildrew at Yale. Not sure what more they can offer but worth a shot.

 

[EddieL.]

It's a Dr. Hildrew at Yale. Not sure what more they can offer but worth a shot.

He's the doctor I saw in January. At that point, I had noise-induced tinnitus for 6 months, and had started Zoloft 2 months before the appointment. Due to overprotection, my sensitivity to sound had gotten really bad, and he advised weaning myself off earplugs and earmuffs, which I eventually did, and my tolerance is back to normal. I have my good/bad tinnitus days, but, otherwise, I just live my life. Granted, I'm more careful than I used to be about exposing myself to loud noise, but it's much better than when I was at my worst.

Before your appointment, I'd recommend making a list of everything you'd like to ask him. My initial visit with him was only 15 minutes, so it really helped to have my thoughts organized. Back in January, he mentioned that they were starting a tinnitus clinic at Yale, but I'm not sure if it was sidelined because of the pandemic. Let me know if you have any questions.

 

[GBB]

He's the doctor I saw in January. At that point, I had noise-induced tinnitus for 6 months, and had started Zoloft 2 months before the appointment. Due to overprotection, my sensitivity to sound had gotten really bad, and he advised weaning myself off earplugs and earmuffs, which I eventually did, and my tolerance is back to normal. I have my good/bad tinnitus days, but, otherwise, I just live my life. Granted, I'm more careful than I used to be about exposing myself to loud noise, but it's much better than when I was at my worst.

Before your appointment, I'd recommend making a list of everything you'd like to ask him. My initial visit with him was only 15 minutes, so it really helped to have my thoughts organized. Back in January, he mentioned that they were starting a tinnitus clinic at Yale, but I'm not sure if it was sidelined because of the pandemic. Let me know if you have any questions.

Much appreciated, I'll definitely prepare so as to make the best use of my time.

 

[Juan]

I work for an investment bank, and would switch to management consulting. The distortion alone which makes all white noise sound cutting would be the probable game changer. If I just had tinnitus that was not reactive and no distortion, I could probably try to mask and just muddle through. I think my fate really rests on the distortion - I have noticed Xanax seems to lessen the impact but I can't use that reliably.

Interesting. I think it would be tough to work in a noisy environment like a busy trading room or as a floor trader but in consulting you should be absolutely fine, in the peace and quiet of an office.