A Year of Reactive Tinnitus and Severe Hyperacusis

I had low to moderate tinnitus for 20 years, brought on by an accumulation of noise trauma from motorcycle riding, concerts, and various industrial noises. Through my employer, I was able to get state-of-the-art hearing aids and, in the beginning, found them beneficial. The built-in noise generators were useless because my tinnitus overpowered them. I have used sound therapy at the beginning and through most of my severe tinnitus periods. I successfully habituated to the tinnitus, and it was a nonissue for many years until the accumulated noise trauma finally caught up to me. My primary care physician prescribed Xanax and Ativan to manage panic attacks and also prescribed Temazepam as a sleeping aid. They also tried multiple anti-depressants, but all of them exacerbated my tinnitus.

I became a patient in the DBS Clinical study run through the VA in San Francisco. My care was supervised by their Chief Otolaryngologist and the Chief of Brain Surgery; both were the main investigators for the study. I also saw an audiologist and had many pre and post surgery hearing tests, along with MRIs and functional MRIs. I also periodically saw a Doctor of Psychiatry who, as part of the clinical study, had me perform various tests to determine my level of mental functionality. My hearing loss was confirmed starting at about 12 kHz and degraded significantly in both ears, and my tinnitus frequency was measured at 12.7 kHz to 13 kHz.

The DBS system was implanted in June 2016 and powered on one month later. I followed a protocol where I would set the DBS system at home to various predetermined settings every three days and record the results of my tinnitus level on a data sheet. During the following months, I took multiple trips to the VA in San Francisco to meet with the clinical team to discuss the results and potential setting changes.

Unfortunately, I had to exit the study in February 2017 as my tinnitus became more severe, and the DBS system appeared to exacerbate my tinnitus. The DBS ex-plant surgery was performed three months later. Shortly after February, I tried to end my life but was unsuccessful. I'm grateful that I failed and realized I would only transfer my suffering onto my family; I'm now determined to live life until I die of natural causes.

I had to go on medical leave from my job shortly after February as I could no longer concentrate and perform the work.

I finally retired in August 2017 from my 20-year career as a medical device engineer/senior manufacturing engineer. I was heartbroken as I really loved the work of helping people by creating De Novo medical devices at the multiple startups I worked at and finally working at the company that created the da Vinci surgical robot. Retiring early has been a rough road financially, but I believe I have enough to make it to the end.

I knew the risks of participating in the clinical study as I've been involved in running them for many years myself when I worked at various medical device start-up companies. The VA funded the DBS clinical study to help soldiers suffering from tinnitus from their active duty. I hoped that by volunteering for the study, I could do my part to help them, but alas, it was not to be.

I eventually stopped using the hearing aids as I found that they were exacerbating my tinnitus; the clinical study audiologist confirmed to me that this could happen with people who have severe or catastrophic levels of tinnitus.

Sound therapy is useless to me now as I'm completely deaf above 5-7 kHz. I haven't taken Xanax or Ativan for many years, but unfortunately, I am dependent on the nightly Temazepam for sleep. I have tried multiple times to titrate myself off of this benzo but have been unable to do so. I'm happy to get 5 to 6 hours of sleep a night.

I appreciate any advice you can give, @Michael Leigh. I've always appreciated your helpful nature towards others on Tinnitus Talk.

 

Thank you for your kind comments, @Jammer.

Thank you also for writing such detailed information about your tinnitus and the treatment you have had. I printed your post and took my time to read it. Some highly professional people have examined you in the medical field. I wish that I were able to give you some advice that would make your life a little easier when coping with tinnitus, but unfortunately, I can't.

I think you are doing all the right things, including taking medication. I admire your will and determination to carry on, and I hope at some point, your doctors will be able to help you more.

Please take care, and wishing you all the best,
Michael

 

Hey @Jammer, I'm really sorry to hear you have had so much taken from you; this condition can be really brutal.

I, unfortunately, like you, became dependent on benzodiazepines.

I am not sure how you've been trying to taper, but I really advise you to research the "Ashton Method" and, under your doctor's supervision, switch from Temazepam to Diazepam and do an extremely slow taper following the guidelines, set out by the Ashton Method. Diazepam leaves the body far slower than Temazepam, and combining this with a slow taper will allow your body and nervous system to adjust properly, dramatically increasing your odds of staying off them.

Benzodiazepines serve an important role in medicine and shouldn't be vilified; however, taking them long term like both you and I have, even in recommended dosages, can lead to long-term negative cognitive changes as well as worsen both tinnitus and hearing loss.

I'm not going to lie to you and pretend it's going to be a magic bullet, but any relief is good when things are bad.

Regardless of what you decide to do, @Jammer, I really hope you can find your own peace and that things improve.

All the best,
Liam

 

I think it is high time you faced legal consequences for your dangerous advice that has ruined numerous lives so far. Also, the misinformation you spread across Tinnitus Talk and Facebook groups should be punishable by law and you must take responsibility for your own words.

 

I have always said my advice is not absolute. Everyone is free to make up their own mind. I do not believe any advice I have given about noise-induced tinnitus and hyperacusis is harmful or dangerous. It is the same advice I was given by my audiologist and other audiologists who advise tinnitus patients.

If my advice is followed correctly, it will not be dangerous. Please tell me what advice I have given is harmful or dangerous. I have always said a person should be under the care of an audiologist who specializes in tinnitus and hyperacusis management. I cannot be held responsible if people do not follow my advice and consult with their GP/PCP or audiologist before following my advice or following it incorrectly!

Michael

 

This is total, absolute bullsh*t. If a person has reactive tinnitus/noxacusis, they ABSOLUTELY SHOULD isolate from noise. You base all your opinions on outdated nonsense sputtered by clueless audiologists.

Literally what I mentioned above. I absolutely agree with @Freerunner. Your advice is, without any doubt, dangerous; I know at least a dozen people who have catastrophically worsened due to your delusional nonsense.

 

You should be banned from this forum.

 

Update:

My tinnitus has worsened, possibly due to construction on our backyard three weeks ago, a haircut from buzzers, construction that lasted over a week, and then our smoke alarm. I had earmuffs on for the construction and plugged my ears from the smoke alarm, but that wasn't enough. Now my family is getting tired of it and decided that if I keep this up, I'll be sent to a mental hospital. I wish it would stabilize at this point. I wish I had a happy ending like @AnthonyMcDonald.

 

I am a new member here, so I am still learning, but I trust your opinion after reading your inspiring success story.

I was in rough shape in February with bad reactive tinnitus and hyperacusis; however, it has improved slightly. I haven’t been following any particular protocol, although I used earplugs a lot initially, which made me uncomfortable because I didn’t like feeling plugged up. I wore them occasionally around the house and in the shower for a few weeks, then just stopped because everything sounded too loud to me when I took them out.

Now, I rarely wear them unless I’m going outside away from home, where I know there could be unexpected noise. I’ve tried keeping it very quiet inside my house while my wife was traveling for 10 days, and I'm not sure if it helped or made my ears more sensitive. My ears responded the same way even when quiet. They would react to soft sounds but then not react to loud sounds, which is the same if I’m in a louder environment away from home.

How do you know when to start not protecting your ears as much? Sometimes, by accident, when I’m not wearing earplugs and get an unexpected increased noise incident, it hurts my ears, and the next day or two, it seems, at times, my ears will be at a slightly lower volume.

To summarize, when I’m at home and protective, my ears blow up and cause pain for a few days due to a box being opened. I’ve also been out at a grocery store when a kid is crying, and my ears respond the same way.

Even at home, where it’s a controlled environment and very quiet, I can still get random sounds that bother me which again is a very quiet environment.

At this point, I’ve realized I don’t seem to have much control over how my ears respond when it’s quiet or noisy, so I’m getting tired of worrying about it. Don’t get me wrong; I always have two sets of earplugs on me at all times and will use them if there are any potential loud sounds around me. In a few instances, I also wear them at home.

 

I'm so sorry. I feel for you. Often, it feels like those who care would rather you not be their problem and disguise it as helping you to "get better." I've almost been committed to a mental hospital twice with this.

Keep us posted.

 

Susan Shore said in her recent webinar that sound therapy alone is ineffective. There is no debate. A meta-review shows it's ineffective. Case studies are meaningless and cannot prove anything without a control. You could only have a control if you cloned the 'case person' and compared it to the treatment arm. @Michael Leigh may be well-meaning, but his advice is outdated and robotic.

 

I am also having a hard time coping with this. I developed loudness hyperacusis and dysacusis in December after following some mild advice to listen to a tinnitus 'relief' video too loudly when my tinnitus spiked due to Visual Snow Syndrome. It didn’t work for me initially, so I turned up the volume on my phone speaker. The trauma was unilateral, so I was very confused when I sat in the ENT's office the following week, and my other ear started to feel full. By the time I got home, I had probably lost 30 decibels in loudness discomfort levels (LDLs) between driving there and back in my loud car (with an earplug in the trauma ear) and sitting in that office for 3 hours between the audiologist and ENT appointments.

I decided to try sound therapy with music as I started to recover a bit, and within a minute, I developed noxacusis. The song wasn’t even loud; it just had a lot of high frequencies in it. Within a week, I couldn’t speak despite isolating myself at home in mostly silence. So, I foolishly tried more sound therapy a month later as I was still worsening in silence. In retrospect, this ended up being caused by the 33-decibel heater at night, despite wearing earplugs. At this point, with 30 LDLs, I convinced myself I just had to do more and more every day to 'retrain my brain.' Thirty minutes of cleaning up dog poop in the yard with double protection sent me into a catastrophic state that I’ve been in for six months now. I worsen from eating, and even a near-silent environment just trying to survive aggravates my condition.

In April, I was desperate and tried benzodiazepines to cope, starting with Clonazepam twice a week for two weeks, then switching to Valium due to rebound anxiety and suicidal thoughts. A few days earlier, I had started Riluzole for my OCD and Visual Snow Syndrome. Combined with having taken four 5 mg Valiums, I started getting reactive tinnitus, which weirdly enough kicked in when the drug did and not during withdrawal. I later found out that Riluzole stabilizes not only Glutamate but GABA as well, and it was fighting to stabilize my brain, causing paradoxical reactions to benzodiazepines. Not realizing this, I took a few more Valiums over the next two weeks, but the damage was done. By the time my micro-taper was complete, I had reactive tinnitus in the other ear. I’ve been off them for over a month now, and it feels like it’s still getting worse despite being in silence.

My biggest issue with tinnitus is that new tones are constantly being added and how unstable it is. Most days, I wake up with three or four tones, and their volume, pitch, and intensity are different every time I wake up. By the end of the day, I’m dealing with 15 or more tones that seem to accumulate from something as simple as taking a bite of food too loudly. Not only do I have no chance with noxacusis and hyperacusis, but the reactive tinnitus also seems progressive, and it’s terrifying knowing there is nothing that can be done about it. For some people, it just keeps getting worse despite being in silence, so I sympathize with you @HopeForAll96. I hope we find stability and hopefully recovery one day.

 

My understanding is that Susan Shore has mentioned having very mild tinnitus. She may be an excellent audiologist, but she knows nothing about living with severe tinnitus and doesn't know how beneficial sound therapy can be in treating it.

We are all different. The sobering truth about tinnitus is this: It comes in many forms and intensities, and no two people will experience it the same. It can be mild, moderate, or severe. There are only three or possibly four treatments currently available for the condition: sound therapy, counseling, medication, and relaxation techniques. One or a combination of these treatments can help a person live with their tinnitus.

If my suggestions of the four treatments recommended are outdated, robotic, and advised by many medical professionals to treat their tinnitus patients, I would like to know what treatments you advise to help people cope with tinnitus.

Perhaps you are waiting on Susan Shore's medical device to treat tinnitus. I don't want to be pessimistic, but I very much doubt such a device will help people with severe tinnitus. Just my opinion.

Michael

 

Agreed.

It was very brave of you to post this @Michael Leigh. I got shot down in another thread quite aggressively for daring to express my opinion on this device.

Some forum members may benefit from Googling what the word 'opinion' actually means.

 

Do you ever shut your trap with misinformation and bullcrap? Why do you need to post so much when you know jack shit about severe tinnitus?

None of the treatments you listed are effective, and none reduce tinnitus. Putting more sound into a damaged auditory system, especially a severely damaged one, should not be advised.

 

Please go away. Is having severe tinnitus a requirement for developing an effective treatment? If so, how severe is Jastreboff's tinnitus? I have not heard he has any. He is just a grifter who has taken advantage of patients with his quackery and enabled others to do the same.

 

Hello @Jammer, @Yeshua7, @Michael Leigh, and everyone on this post.

Having had bilateral tinnitus for thirty years and hyperacusis for three years, I have found that developing hyperacusis, which I believe I had very mildly over the years, has been a significant challenge. However, sound therapy and counseling have been incredibly beneficial. Over the past three years, I have seen great improvement, but it requires patience and a lot of time.

I'm not 100% there yet, as there are still things that bother me, but I'm making progress. I believe that attacking people who have helped on this forum for many years is horrid, especially those like myself who developed this illness in 1994. Many other tinnitus veterans have battled and navigated through this soundscape long before forums like this evolved.

Back then, we had no help and had to rely on libraries and other resources. I had no one to turn to, as there were no groups or communities. However, looking back, I sometimes think that this was better because we were not influenced by other people's experiences and had to find our own way.

Thank you for your support and understanding.

 

For a lot of people it is like that. If the tinnitus or hyperacusis is mild or moderate, sound therapy and counseling can help greatly to continue with life.

The vocal few who are on the verge of suicide from it all can't see the forest for the trees. That's why there are nutcases like @Travis Henry who scream from the rooftops "no sound therapy, no counseling, live in isolation, don't take any meds or vaccinations" --- anyone sensible can understand that's demented and manic "advice."

 

How does sound therapy do anything but mask tinnitus? It cannot fix tinnitus.

I wish everyone healing, but we don't need people with lowered sound tolerance being pushed to do sound therapy.

I am glad for anyone who gets better. I wish I could go to the forest. I wouldn't be on Tinnitus Talk at all. Anyone with unstable tinnitus should rest the auditory system and stay in a soundscape that doesn't hurt.

Not many would still be alive with what I'm dealing with. It's my fault for not realizing time, quiet, and no medications were best for my situation.

I'm sorry for attacking anyone. It's just such a shit show that we don't have a better protocol put in place that keeps people from getting catastrophic tinnitus.

It's not a one-size-fits-all situation like @Michael Leigh plays jt.

 

Everyone is entitled to their opinion, @Jupiterman. If someone wants to shoot me down quite aggressively, then let them go ahead. I may choose to respond, provided they are respectful and don't use any form of foul language. If they do, I definitely won't engage with them.

@Eleanor89 is quite right. Back when we first got tinnitus, there were no forums for help. Now, some people use them to moan and groan about their health service and the government for not finding a cure for tinnitus. Tinnitus is one medical condition on a long list, for there is no cure. Twenty-eight years ago, when I first got tinnitus, I read a newspaper article saying that 19 out of 20 medical conditions cannot be cured, but many can be treated to help a person's quality of life.

Michael

 

Dr. Shore understands tinnitus enough to know that a real treatment that actually reduces the volume is needed for severe sufferers, unlike Dr. Jastreboff, who wants people to live in chronic suffering. Dr. Shore wants to reduce tinnitus to a very manageable level and not try to substitute one annoying/torturous noise for another.

If you have your doubts about the device, you should back them up with solid evidence.

 

That's ironic. You have a negative opinion of Dr. Shore's bi-sensory stimulation device, saying that you doubt it will help despite the clinical trials that show it works. Yet, you think the Ti-ex and Cleanhearing Sono devices that make clicking sounds actually help severe tinnitus.

Sound therapy and counseling don't actually lower tinnitus volume as Dr. Shore's device has been shown to do.

 

I have 28 years of experience with tinnitus, which is my evidence. Dr. Shore has no experience with severe tinnitus, so I am entitled to my opinion and skepticism about her device's ability to treat severe tinnitus. I reiterate severe tinnitus.

By the way, I have had TRT twice. My audiologist was born with tinnitus, and I had the full TRT treatment following Professor Jastreboff's method. I was wearing white noise generators for two years with regular counseling for the duration and found it helpful. It is not a cure for tinnitus, but it helped me habituate. My severe hyperacusis with pain was completely cured in two years, wearing white noise generators to desensitize the auditory system. My tinnitus reduced to a level that it was rarely heard.

I had another noise trauma in 2008, followed by TRT a second time. I have often written about this experience on Tinnitus Talk, which you can find on my started threads.

Your profile shows that you have had tinnitus for only a short while. With respect, I shan't say anymore.

Michael

 

With respect, I am dealing with noise-induced tinnitus, not any other type of tinnitus. I have serious doubts about Dr. Shore's device for treating severe noise-induced tinnitus. The majority of the people at Tinnitus Talk have this type of tinnitus, and often, it is accompanied by some oversensitivity to sound or hyperacusis, which Dr. Shore has no experience with.

I have read much about Dr. Shore's forthcoming medical device for tinnitus. At first, I was enthusiastic until I watched a short video where she mentioned having very mild tinnitus.

This is my reasoning for doubting whether her tinnitus device will benefit in treating people with severe noise-induced tinnitus. It may well help people with other types of tinnitus, and I hope that it does. However, I am dealing with noise-induced tinnitus, which is a totally different kettle of fish when it is severe.

I rest my case,
Michael

 

Dr. Nagler has explained that the research wasn’t carried out very well:

 

I for one think his logic checks out. If Jastreboff doesn't have severe noise-induced tinnitus, then how could he understand that TRT is an effective treatment for noise-induced tinnitus?

Jokes aside, I appreciate Mike's opinion regardless of whether or not I agree with him.

 

There is a problem with that, because his advice can be dangerous, and is plastered over this forum. Newcomers may and did think he is some authority here.

 

All I see is people stating their thoughts and ideas about certain things. I only see @Michael Leigh trying to help people and weed out the bulls**t and false hope, which prays on vulnerable people wanting help. The best treatment at this point in time is acceptance and avoiding further noise trauma.

 

No, he is promoting additional sound exposure without recognizing severe/reactive cases that will be harmed by it. His advice may be harmless but largely irrelevant for mild cases, as most mild cases will habituate with time. He brings negative value, in my opinion. The only shred of valuable advice is avoidance of headphones, which is contradicted by his promotion of in-ear noise generators.

Yeah, there is a lot of bullshit and false hope. Some people will get better; some will get worse. Time, acceptance, and avoidance of loud noises are the key; I agree 100%.