I've Become a Severe Multitonal Tinnitus Case

Hello, I'm a 29-year-old guy from Germany, so English isn't my native language. Sorry for any spelling or grammatical mistakes in advance.

I got tinnitus in August 2013, the cause being unknown, and I habituated about a year later. For many, many years, I had no issues with it at all and forgot about it completely. Before everything got worse, I had a few sounds, like four or five, that I could hear in the middle of my head if I searched actively for them. Whenever I heard one of them, I didn't think about it anymore seconds later.

However, since the middle of December 2022, it has gotten worse. A LOT worse. First, I've noticed a new sound in my right ear. Only a few days later, there was another one. And then another one. And another one. By now, my right ear has all kinds of tones and it keeps adding new ones. I've also gotten a few sounds in my left ear, but all sounds in my right ear are reactive. They get louder with noise from an external source. If they wouldn't get louder from that, I could probably handle all those tones easily. On top of that, I've got way more head sounds than before. All in all, I'm easily at like 30 tones after just two months and it gets worse almost daily. I live in constant anxiety that new sounds appear and get stuck. I don't know what to do.

I'm not using headphones anymore and just watch YouTube videos or talk with online friends using speakers. An ENT told me it's somatic tinnitus, so it should be related to muscles. But can I really get more and more tones just from muscle issues? I was diagnosed with TMJ and will treat that starting Wednesday.

I can't live with more and more noises appearing. If I have that many sounds after just two months, how many could I possibly get? Please tell me there's like a turning point, where sounds can fade/disappear and no new sounds will appear. Since it's only been two months, is this normal and things can still change easily? I've heard from cases with multitonal tinnitus, where the noises all disappeared until there were only like one or two. Hopefully, this can happen to me as well, even if it will take several months.

So far, I have no serious thoughts of suicide, but if it keeps getting worse, I see no way out of this. My only hope would be a cure like Dr. Susan Shore's device and even that could not work with severe multitonal tinnitus like mine.

 

Somatic tinnitus doesn't cause new tones like this. You can temporarily increase the loudness, pitch or create new tones by some specific movements of neck, jaw, mouth, head but that's it. Your doctor is wrong.

You seem to describe reactive tinnitus with the "they get louder with noise from an external source". @Michael Leigh will come here and say there is no such thing as reactive tinnitus, but don't listen to that hobo, he could be replaced by ChatGPT and it would be more useful than he ever has been.

Reactive tinnitus can get better over time, for many it does.

I don't think your situation is hopeless, but don't end your life prematurely, these things can take a long time to get better, we're talking months or even couple of years.

 

Are the tinnitus tones loud, or do you just have a bunch of them?

Can you think of anything that could have triggered this, like medication, accidents etc.?

 

Please do not alert me when writing your posts @ajc as I don't wish to correspond with you. You are ill-mannered and impudent at the best of times and know very little about tinnitus.

Good day,
Michael

 

Hi @WildJello.

I am sorry to know about the difficulties that you are going through with tinnitus at the moment. One of the most common causes of tinnitus is exposure to loud noise. Regularly listening to audio through headphones, earbuds and headsets, at too high a volume without realizing it, is often responsible.

When you first got tinnitus in August 2013, if you were a regular user of headphones, earbuds or headsets, one of these devices probably caused the tinnitus. If you regularly attended concerts or night clubs where loud music was played this could have caused the tinnitus too. If you have regularly been using headphones since the onset of your tinnitus in 2013, then it's likely they have made your tinnitus worse but your situation can improve so don't give up hope.

Your symptoms suggest to me that you probably have hyperacusis (oversensitivity to sound). This condition often accompanies noise-induced tinnitus and can manifest itself in many ways. If you do have noise-induced tinnitus, then I think you should see an audiologist that specialises in tinnitus and hyperacusis management.

Please click on the links below and read my posts. Go to my started threads and read: The Habituation Process, How to Habituate to Tinnitus, Will My Tinnitus Get Worse? Can I Habituate to Variable Tinnitus? Tinnitus and the Negative Mindset, Acquiring a Positive Mindset, Hyperacusis, as I See It.

Take care and hope you start to feel better soon,
Michael

New to Tinnitus, What to Do? | Tinnitus Talk Support Forum
Tinnitus, A Personal View | Tinnitus Talk Support Forum

 

Hello, thanks for the replies so far!

None of the ear sounds are really loud, there are just a lot of them and they are getting more constant, but only in my right ear. An MRI didn't show anything. The head sounds can get loud sometimes. If I slept well, all ear sounds are quiet in the morning and get louder during the day.

Unfortunately, I'm experiencing a spike in my left ear right now, after editing a YouTube video. That suggests to me, that I have noise-induced tinnitus indeed. I've used headphones for 9 years without it getting worse or acquiring any new tones and even though I didn't change anything, it now started to get worse rapidly. I can't think of anything obvious, that caused this change of tinnitus behavior.

Am I doomed now? Can I not continue to watch YouTube videos or talk to online friends if I want all this to go down? I've had a spike in my left ear a few days ago and it disappeared, so I'm not going into panic mode yet.

Like I've said, the reactive sounds are all located in my right ear. They get louder even if I just turn that ear towards my PC.

Yes, I probably have/had very mild hyperacusis. When things started to get worse in December, I remember hearing the refrigerator way louder than before for a few days. Apart from that, nothing seems louder than before and/or causes ear pain, which is what hyperacusis usally does, if I'm correct.

 

Noise-induced tinnitus can remain stable for many years after habituation, providing the person takes care not to be exposed to very loud sounds. Wearing earplugs at a club or concert is no guarantee that your tinnitus will not spike and get worse. In addition to this, a person that has this type of tinnitus risks making the tinnitus worse if they listen to audio through headphones, earbuds, headsets, noise-cancelling and bone conduction headphones, even at low volume.

Not everyone that has noise-induced tinnitus and uses headphones will be making their tinnitus worse. However, the risk of tinnitus getting worse is always there as in your case. I have explained this in my thread: Can I Habituate to Variable Tinnitus? Please click on the link below and read it.

You are not doomed but I advise you to follow my suggestions in the link below and don't use headphones again, even at low volume. Please try and see an audiologist that specialises in tinnitus and hyperacusis management.

I don't want to frighten you but please be careful with what you're doing. Noise-induced tinnitus is not something to take lightly. It can be ruthless and has no mercy if it becomes severe.

Take care,
Michael

Can I Habituate to Variable Tinnitus? | Tinnitus Talk Support Forum

 

I agree with @ajc. While Michael Leigh can give some good advice, like avoiding headphones, a lot of what he says is baseless malarkey that can actually be dangerous advice for some people (like the whole "reactive tinnitus doesn't exist").

My recommendations are to absolutely and positively avoid any electronic noise whatsoever, speakers included. My tinnitus was insanely reactive, and still is to an extent, and this is the absolute worse trigger that I ever had and still have.

I don't normally spike anymore from natural noises, such as voices, but anything from a speaker will worsen me to an unimaginable degree. Avoid it like the plague. Take it real easy for a few months. Use hearing protection. You will get better.

 

@ajc and @AnthonyMcDonald, thanks ever so much for alerting new posters regarding @Michael Leigh's counterproductive, downright pernicious advice, which (as far as I am concerned) serves the same function as a facial mask that prevents the COVID-19 virus from entering the body.

You provide a very valuable pushback such that new posters can avoid a further worsening from following so much of his advice. You in fact quarantine the verbal bacillus that so much of his advice represents.

The most telling indication of @Michael Leigh's ignoble cowardice is that he never specifically addresses the points you are making, and (with unintentionally hilarity) acts as if placing you on "ignore" constitutes some sort of punishment.

 

Even if @Michael Leigh could come out as being a bit intolerant, he is very sincere in promoting sound generators for severe reactive tinnitus and hyperacusis. I suffered bad from both.

Anyway, those sound generators gave my my life back. It could be quite a challenge to start with sound generators if you are a severe case. I was in very much doubt and stopped several times. @Michael Leigh always convinced me to push again and was very helpful in other ways. For example, how to optimize the sound generators to get the fastest results and minimize risks for setbacks. For that I am forever grateful.

If you are suffering bad from tinnitus, please give 24/7 sound enrichment a chance. I have “tested it all” for you and “sound generators” are by far the most effective treatment. I just wish more could seriously give it a try! It is not a quick fix that every one is looking for but it is a life saver for a lot of people. You might see improvements in a few montsh but for me it was more like 6 months to a year. Just do it. It is a passive habituation process. Help your bran and nervous system to adopt!

 

Do you have any hearing loss? If not, then you should aim to calm the nerves and muscles around your ear.

In my case, Xanax and Mydocalm (muscle relaxants) before sleep have been very helpful for a similar situation I had back in July 2022. They must be taken under the guidance of a doctor and take few weeks to fully kick in. Also Vitamins B complex, D, and Zinc help.

I hope this helps.

 

You should be spot-on with this. I'm using the PC all the time and my tinnitus sounds even react to it just being turned on. However, I just don't see how I could possibly do that. It sounds silly, but YouTube and talking to online friends are the most important parts of my life. Yes, I want my tinnitus to become less reactive, but giving up the only things that are worth living to me would be the same as not living at all.

I wonder how other people lost the reactiveness of their tinnitus. Did they also give up the use of any electronic devices? Do I also have a chance to get positive changes, even if I continue to live my usual life?

This post must sound so stupid, when your advice is that obvious and useful, so I'm sorry for still being in denial.

 

I thank you for your comments on this thread @David S. I am also pleased the sound generators helped you. Over time @AnthonyMcDonald has become a constant irritant like his fellow cohort whom I placed on ignore some time ago. They have nothing worthwhile to contribute to this forum by means of helping people with tinnitus and thus, spend their time disparaging me. Whilst I cannot stop this, I can prevent myself having to read their posts and I will continue with what I am doing.

Take care,
Michael

 

I know multitudes of people who have gotten catastrophically worse from medication, especially benzos like Xanax or Clonazepam. They should not be taken in any situation whatsoever. The short term possible relief is not worth it in the long term worsening. There are other methods, like CBT, to get anxiety under control.

Sacrifices must be made. I was no contact, homebound, and didn't use any PCs whatsoever for an entire year. Sorry, but this is something you have to accept if you want to improve. Your tinnitus is very unpredictable now. PC fans and other electronics emit a high frequency and should be avoided if you have reactive tinnitus. Put it into a closet or outside your door and get some long wires and extension cords.

No, you do not. You have to look reality in the face and make drastic changes to your lifestyle or you will keep getting worse.

You're joking, right? All my opinions are based on scientific research, facts, and analysis of hundreds of cases. Your advice is solely based on your own opinion. Instead of being delusional and saying that everyone is wrong except you, why don't you actually think for a change?

You most likely improved with time on your own. There are many studies that show that "sound enrichment" makes tinnitus worse for most in the long run. Just because you were lucky and didn't get worse doesn't mean everyone will. I can state dozens of cases where sound generators made tinnitus worse.

Pawel Jastreboff states himself that noise generators do not lower tinnitus, they help some stable people distract and help with habituation. Time helps tinnitus go into remission, not blasting ears with more noise. I don't understand where this opinion on sound enrichment lowering tinnitus came from.

 

The first ENT visit in early January didn't show any hearing loss. I should probably do a second hearing test, though.

 

100 percent. I agree here with @AnthonyMcDonald.

Sound generators will worsen reactive tinnitus tremendously. You have inflamed nerves and need to be in quiet as much as possible to let them become less inflamed. You will regret trying to push through things and make your life completely unlivable.

Sacrifice now before things become horrific. Tinnitus has no limit. Never take any drugs whatsoever. Get a clean diet.

Don't listen to anyone who says to take drugs for these conditions. That's the worst advice to give anyone with tinnitus and the biggest factor in me completely losing my sound tolerance and tinnitus becoming beyond catastrophic. People and doctors suggesting me to take benzos and my parents badgering me to follow doctors' orders. Why anyone suggests people to take poison on this forum is beyond me and they all should be banned.

 

I have one more question: What exactly is the difference between the terms reactive tinnitus and hyperacusis? I've read about it a lot and it still isn't clear to me.

 

Reactive tinnitus is mentioned a lot on tinnitus forums and online. I do not regard it as a medical condition but believe it is a sub-net of hyperacusis. I prefer to keep things simple because the more complex one makes tinnitus, the more difficult it can become to habituate to it. Therefore, I include this hypersensitivity to sound which can manifest itself in many ways under the umbrella of hyperacusis, because one of the best ways to treat it is using sound enrichment and the same applies to hyperacusis. Most people that have tinnitus and complain of having an oversensitivity to sound have noise-induced tinnitus, and often the underlying cause is hyperacusis.

@David S has mentioned, that he first used sound enrichment to treat his reactive tinnitus and hyperacusis, which could have first been provided by a table-top sound machine. When he was comfortable with that, he slowly introduced the wearing of white noise generators. I remember when he was having a lot of difficulty wearing the white noise generators, and I'm pleased that he persisted with them and is now feeling a lot better.

If people want to say they have tinnitus, reactive tinnitus with or without hyperacusis, that is fine. Please remember that tinnitus can be stressful and for some very debilitating so why complicate things?

Some people have told me they have tinnitus, hyperacusis, reactive tinnitus, phonophobia, misophonia, noxacusis, and are convinced there is no help available for them. I don't think this is a healthy way of thinking. When I have asked have they been examined by an ENT doctor and been seen by an audiologist, that specialises in tinnitus and hyperacusis treatment, I was told no.

This is the absolute truth what I am about to say: I have spoken with an ENT doctor that has tinnitus, and used to visit this forum. He agreed with me that there is no medical condition called reactive tinnitus.

All the best,
Michael

 

What are your scientific sources to back this information? Anecdotal cases don't count, as 85% of people (research backed statistic) have tinnitus/hyperacusis go into remission over time/habituate/improve their anxiety levels.

@WildJello, don't listen to Michael. His opinion is absolutely baseless and he considers himself to be correct with his only source for his opinion being himself.

Hyperacusis is hypersensitivity to noise (noise is louder than usual). Noxacusis is stabbing/burning pain to noise. I've had both.

Reactive tinnitus is tinnitus that worsens very easily with noise, or increases in volume with noise. I have no idea why Michael thinks that reactive tinnitus is the same as hyperacusis, that's just plain wrong. I've had loudness hyperacusis, noxacusis, and reactive tinnitus, and the difference is blatantly obvious. I also know multitudes of people who would disagree with the opinion that reactive tinnitus is the same as hyperacusis.

 

Who cares about the complexity of a disease, let's go back to chopping off limbs and hitting stones on people's heads to treat them TROLOLOL.

Seriously dude, the more you say, the less people like you.

 

I am not here to be liked but here to help people and I will carry on with what I'm doing.

I wish you well,
Michael

 

Hi @WildJello. I am sorry about your spike, but you will be fine, I am sure of it!

As @Michael Leigh has suggested, I agree that the first step would be that you visit a very well trained Otologist, Audiologist or ENT.

Most important is to understand if your problem is related to any inner ear or synaptopathy damage, or if it is more a middle ear or any other issue (TMJ, stress, neck issues). There are some types of tinnitus that can be solved, so it is crucial that you know the cause.

I strongly suggest that you write down anything prior to your tinnitus spike that could have affected your ears in the past days. Maybe you took some ototoxic medications, were exposed to loud sounds, stress, neck injuries, allergies, infections... etc.

Additionally, get your ears very well checked, to see if you have mucus, retracted eardrum, Eustachian tube issues, allergies, inflammation, and also do a very complete high-frequency audiogram and speech-in-noise test (it is very important that the speech-in-noise test is very well done with noise in the background). If you have a previous audiogram, you can compare the results to that.

In case your issue is a TMJ one, you will find success stories here on the forum. If you treat the TMJ correctly, it can solve your new tinnitus spike.

Finally, just to mention. Clonazepam can be useful, it is well researched and can be helpful for some stages of your tinnitus. Your doctor is the one who may consider that for you. Sound therapy can be very helpful for many people, and others not so much. But it is a well-researched option for people with tinnitus and it can work.

It's most important that you identify the reason of your new spike so you can have the best treatment possible.

Let us know and all the best!

 

Hello,

I do believe in the principles behind TRT sound therapy as it has helped me desensitise since getting hyperacusis. I am in a much better place, because of sound therapy, in-ear generators, sound machines and counselling.

I’ve reached out to a lot of people on my journey to recovery, including @Michael Leigh whose knowledge has not only helped me but a lot of other people on this forum.

There really is no need to be rude to someone who has devoted a lot of his time in helping others.

 

Xanax and similar medications must be taken under the strict guidance of a doctor. In my case they have been very helpful on 3 separate tinnitus occurrences with no side effects. Today I’m enjoying an absolutely normal life. However, I have been taking only a small dosage (noting that I’m a physically a big male). Taking Xanax and similar medications randomly or in high dosages and without a doctor’s guidance is dangerous.

 

With all due respect, doctor's guidance means shit when you get hooked on Xanax. Your doctor's not there to take your anguish and pain away when you cry in your bed from the rebound anxiety or awful withdrawal effects Xanax caused. Xanax is the MOST powerful benzodiazepine. Short hart-life. Extremely addictive and tolerance building.

Something like Klonopin or Valium is a better, safer choice, but can still cause a lot of trouble, and should be avoided unless one has no choice but to go down the benzo path.

Being a big buy and taking a small dose of Xanax does not mean you won't build tolerance and need bigger and bigger doses as time goes on. Your weight means nothing.

Benzos should be used only as a last resort, if the alternative is suicide.

 

I agree with @ajc. Benzos should only and exclusively be used as an absolute last resort, as the side effects of dependency, especially in tinnitus patients, are horrendous.

Doctors know jack shit about tinnitus, especially about tinnitus and benzos. I've seen dozens of people get significantly worse "under the guidance of doctors".

These specialists in the vast majority of cases recommend absolute baseless garbage and give recommendations that can make people worse. They also just peddle TRT for every single tinnitus case in existence, regardless of cause and severity/reactivity/hyperacusis/noxacusis, as a miraculous "fix-all" approach.

Also, these "specialists" tend to do dangerous tests like the acoustic reflex test, which has made dozens of people worse, microsuctions to remove ear wax, which is 150 dB right next to your eardrum ("this can't possible make your tinnitus worse"), or recommend MRIs, which are useless in most cases and also can catastrophically worsen tinnitus/hyperacusis. I will reiterate that these guys are useless when it comes to tinnitus/hyperacusis and in most cases pull facts out of their ass or just gaslight you.

 

I actually think that my tinnitus is a little bit worse compared to when I started with sound generators. To me it is all about reaction. I will have to deal with my tinnitus for the rest of my life. It took me 10 years with severe tinnitus to come to that conclusion. Sound generators, a benzo and an SSRI brought me back from severe depression to a pretty normal enjoyable life. Again, we are all different and this is just my individual experience.

 

Travis, I know you have been going trough a really rough time. I have been there too and know the pain. I think we have some similarities. I messed up bad with LLLT. If I remember correctly, you had a similar experience?

It is possible that we both messed up our tiny nerves in the cochlea in a similar way. My tinnitus was very much reactive and I also suffered severely from being over sensitive to sounds, ending up with me wearing 3M Peltors all day long.

I am by no means cured but I can now go outside in calm environments, be fully productive at work and even sometimes enjoy life at restaurants with friends and family (with 3M soft earplugs).

There is hope, just keep punching. Hour by hour, day by day.

 

Hey, did you have piercing reactivity by any chance? I’ve been able to push through all except that one.

 

Yes, I very much do. High pitched, unstable, unmaskable as well. The reactive part is the reason I come to Tinnitus Talk at all. I have a lot of friends and family with tinnitus without the reactiveness and they do not seem to care too much. I was basically dysfunctional for 6 months knocking myself out with a benzo. Then I for the second time started with the noise generators. Slowly, in a process which I cannot explain, I realized there is a world just outside my bedroom that I can be a part of. I am by all means not cured. My reactive tinnitus just gets worse and worse but the thing is I also care less and less. I avoid all noises that trigger my tinnitus. That could be a challenge but nothing I can’t overcome.

Here are the main reasons why I think most of us struggle so much more than others to overcome tinnitus:

1. My tinnitus is not possible to mask or even worse, it tends to get more pronounced around other sounds.
2. My tinnitus is accompanied by sound sensitivity that manifests itself with physical pain or great discomfort.
3. My tinnitus is also accompanied by hearing loss which makes it hard for me to interact with other people.

I suffer from 1 and 2 but not 3. I can still live a very normal productive family life. I used to punish myself quite bad because I messed up my life so bad. I stopped doing that which in itself was a great relief.

Starting with the sound generators for the second time was really a challenge. Every fiber in my body said no. I felt my life was over anyway. What do I have to lose? Read back on my posts from less than a year ago and you understand my struggle.