Am I the Unluckiest Person on Earth When It Comes to Tinnitus? My 6-Year Tinnitus Nightmare: How One Festival Changed My Life

[Kam75]

Hello @Kam75, I am really sorry for what you're going through. I'm in the same boat after taking a glucocorticoid and a tricyclic—just two doses, and I was in hell. The doctors tried to push all kinds of medications on me: SSRIs, benzodiazepines, antibiotics, corticosteroids, and so on.

At my lowest point, I had to go to the hospital because I hadn't slept for days. I was like the walking dead, and I know you understand what I mean. I just want to share that for about a month, I took Trazodone, and it helped me sleep. Maybe you could look into it after reading about the side effects and everything else. I lived in France for 12 years, and I'm 32, so we're about the same age.

Hi @Knietppe, I'm really sorry for what you're going through.

Yes, I completely understand what you described, and I also feel like a zombie because of the lack of sleep. My eyes are as red as tomatoes every day due to insomnia. I feel weak and unsteady, so much so that I sometimes think if someone brushed against me in the street, I might fall.

As for Trazodone, some members on Tinnitus Talk have recommended it to me. I spoke to my psychiatrist about it, but unfortunately, he told me it hasn't been available for sale in France for years.

Everything makes me worse too. All I want is to stop getting worse. I just want to live my life—or whatever is left of it. Tinnitus keeps taking everything from me and punishes me every time I try to make any progress in rebuilding my life.

Hi mate, I feel exactly the same.

Tinnitus has taken everything from me, even my job very soon. I was informed today that my company is reducing telework from three days a week to just one. I love this job, but unfortunately, I won't be able to manage four days on site. It's impossible when I am constantly going through sleepless nights.

I'm really devastated. Work was all I had left.

Hi @Kam75,

Your story is heartbreaking, especially because—even though I don't know you—I thought you were getting better. I'm quite sure I read some of your older posts on the French forum dedicated to tinnitus and hyperacusis. When I read your testimony here, I really felt your pain. It seems like you've already tried so many things…

My case is definitely not as severe as yours, but there are some similarities. I was intensely depressed and going through a serious professional burnout—both untreated—right before my acoustic trauma. My psychiatrist and my ENT are both convinced that the depression and anxiety are making my tinnitus worse, in a way similar to what SafeMusicFan described. Neurotransmitter imbalance, brain hyperactivity, fight-or-flight response, and so on. I'm not saying it's purely anxiety-induced, but it definitely plays a role. And I agree with many of the things @SafeMusicFan said.

My psychiatrist was very insistent that I take antidepressants because of how low I was. She has other patients with tinnitus and strongly advised against SSRIs like Sertraline, which can apparently worsen tinnitus. Instead, she chose an SNRI, Duloxetine. After four months, I'm currently switching to Venlafaxine, as Duloxetine no longer seems to be helping.

The first goal was to improve my sleep. At my worst—dealing with insomnia and intense suicidal thoughts—I was taking 2 mg of Lexomil, 2 mg of melatonin (sometimes 4), 90 mg of Duloxetine, and, in the most difficult nights, Tercian (Cyamemazine). This combination would completely knock me out for at least six hours. It was a strange kind of sleep, but it did allow me to rest.

I'm far from being "pro-antidepressant," but the SNRIs helped me regain enough mental clarity and energy to begin doing the things @SafeMusicFan suggested, and to start cognitive behavioral therapy focused on trauma and anxiety.

I don't know if a medical leave could help you, but it made a big difference for me in the beginning. It lifted the pressure and guilt of having to be productive and follow a strict schedule, when I was barely sleeping and overwhelmed by dark thoughts. That said, I know it can also be a double-edged sword because of the isolation that can come with it.

I don't know if anything I've shared will be helpful to you, but hang in there, @Kam75. Courage à toi!

Salut @Nocca.

You read some of my posts on the French forum Oreille Malade, right? Those must be really old, as I no longer use that forum.

Thanks for your advice! I'm also planning to ask my psychiatrist about adding Duloxetine to my current treatment with Mirtazapine. I had thought Duloxetine was an SSRI, so learning that it is actually an SNRI makes me feel more comfortable about it.

As for Venlafaxine, that's the antidepressant my psychiatrist has been trying to get me to take for years, but I've always refused.
I don't want to frighten you, but tinnitus is listed as a possible side effect of this drug. I've read several testimonials on Tinnitus Talk from people who developed tinnitus as soon as they stopped taking it.

So please be cautious with it!

 

[Carolan]

Tinnitus has taken everything from me, even my job very soon. I was informed today that my company is reducing telework from three days a week to just one. I love this job, but unfortunately, I won't be able to manage four days on site. It's impossible when I am constantly going through sleepless nights.

I'm really devastated. Work was all I had left.

@Kam75, can't you talk to your supervisors about your situation? Are they aware of your problems with tinnitus? Would it be possible to request an exception—for example, an extra day of working from home or a gradual return? Is it difficult for you to go to work because of the noise, or because of the fatigue from commuting between home and the workplace? I hope you find a solution soon!

 

[Kam75]

@Kam75, can't you talk to your supervisors about your situation? Are they aware of your problems with tinnitus? Would it be possible to request an exception—for example, an extra day of working from home or a gradual return? Is it difficult for you to go to work because of the noise, or because of the fatigue from commuting between home and the workplace? I hope you find a solution soon!

Hi @Carolan!

I've been recognized as a disabled worker, but unfortunately, that doesn't grant me many rights—except for the possibility of retiring early under normal conditions.

As far as teleworking is concerned, since I'm a consultant, I am subject to the policies set by the client's company. In other words, even if my own company allows more flexible remote work (which it does), that flexibility may not apply if the client enforces a stricter teleworking policy.

I see that you developed tinnitus in 2000. From your profile, I gather you must have been 28 at the time. That's the same age I was when I suffered my sound trauma.

That's crazy!

 

[trevl]

I forgot to mention that I also have a sort of electric sound that moves in my head. It is impossible to habituate to it, and it is one of the most annoying sounds I experience. It keeps waking me up at night.

My psychiatrist has been trying for years to get me to take another antidepressant, Venlafaxine, but I am very reluctant because tinnitus is listed among the side effects, and people on Tinnitus Talk have said that they developed tinnitus because of this drug.

For now, the only antidepressant I am taking is Mirtazapine, which is considered the safest on Tinnitus Talk, but unfortunately, it no longer works. I have been taking it for at least four to five years.

I really do not know what to do. I cannot stand the lack of sleep any longer.

Hello @Kam75,

I am curious—due to the lack of sleep caused by your tinnitus, which of the drugs you take specifically address the following tinnitus parameters?

1. The loudness of the tinnitus
2. The frequencies of the tinnitus sounds you experience

Do any of the drugs you take actually reduce either of these?

I've noticed that many tinnitus sufferers are prescribed these drugs, but it's not always clear why. It almost feels like doctors have given up or decided they cannot directly address tinnitus itself. Instead, they often prescribe something for what they perceive as a related or secondary symptom.

This approach doesn't target the tinnitus directly and, in the worst cases, may even make it worse—especially since some of these drugs can cause tinnitus after long-term use or after discontinuation.

 

[Kam75]

Do any of the drugs you take actually reduce either of these?

Hi @trevl, it seems there are no drugs on the market that have the potential to reduce tinnitus volume, except Clonazepam, if I am not mistaken. I was prescribed this drug a long time ago, but I do not take it. It does not have a good reputation.

Currently, I am taking Mirtazapine (between 15 and 22.5 mg), but it is no longer working. I wake up every 20 to 30 minutes during the night. Melatonin no longer works either. My psychiatrist also prescribed Quetiapine, but that has not helped with sleep either, and in fact, it never really did.

You cannot imagine how sharp and high-pitched my tinnitus is. I have at least five different sounds.

My next appointment with my psychiatrist is in July. As I wrote earlier, I will ask him to add Duloxetine to my current treatment.

I know that some drugs can worsen tinnitus, but what is worse—accumulating sleepless nights or taking that risk?

 

[lostb1t]

@Kam75, I just want to mention that higher dosages of Mirtazapine are usually more stimulating than lower dosages because of the noradrenaline effect. 15 mg should be fine, but you could try 7.5 mg instead.

 

[Mark F.]

Hi @trevl, it seems there are no drugs on the market that have the potential to reduce tinnitus volume, except Clonazepam, if I am not mistaken. I was prescribed this drug a long time ago, but I do not take it. It does not have a good reputation.

Currently, I am taking Mirtazapine (between 15 and 22.5 mg), but it is no longer working. I wake up every 20 to 30 minutes during the night. Melatonin no longer works either. My psychiatrist also prescribed Quetiapine, but that has not helped with sleep either, and in fact, it never really did.

You cannot imagine how sharp and high-pitched my tinnitus is. I have at least five different sounds.

My next appointment with my psychiatrist is in July. As I wrote earlier, I will ask him to add Duloxetine to my current treatment.

I know that some drugs can worsen tinnitus, but what is worse—accumulating sleepless nights or taking that risk?

I truly hope you find some relief. Keep hanging in there!

 

[trevl]

Currently, I am taking Mirtazapine (between 15 and 22.5 mg), but it is no longer working. I wake up every 20 to 30 minutes during the night. Melatonin no longer works either. My psychiatrist also prescribed Quetiapine, but that has not helped with sleep either, and in fact, it never really did.

You cannot imagine how sharp and high-pitched my tinnitus is. I have at least five different sounds.

My next appointment with my psychiatrist is in July. As I wrote earlier, I will ask him to add Duloxetine to my current treatment.

I know that some drugs can worsen tinnitus, but what is worse—accumulating sleepless nights or taking that risk?

This is my tinnitus, measured using technology at home.

As you can see from the chart, audiologist measurements are often not useful. They rely on the decibel hearing level algorithm, fail to measure at meaningful high or low frequencies, and do not use adequate intervals to produce a meaningful chart.

Accuracy of Hearing Test (Audiogram)?

Hi, My question is how accurate are hearing tests? The reason I ask is because I made a stupid decision to not wear earplugs when a bar was playing loud music for a few hours. I went to the audiologist almost 3 weeks after because my tinnitus is louder and I can’t hear as well. She said that...

www.tinnitustalk.com

I postulate that permanent tinnitus occurs when there is catastrophic damage to hearing cells across a wide enough frequency band. In such cases, recruitment by nearby functioning hearing cells within the damaged frequency range is not sufficient. For example, I do not have tinnitus at 3500 Hz, but I do have high-frequency tinnitus in my left ear at 11433 Hz. I do not have tinnitus at that same frequency in my right ear. My right ear has more gradual hearing loss, which likely allows for ongoing recruitment of functioning cells.

What I can expect in the future is more hearing cell damage, leading to a broader frequency range of tinnitus and increased loudness. That is why I need to protect against all types of noise environments. Damage can occur not only in the high or low frequencies, but also in the mid-range, which would put the remaining functional cells at further risk.

My tinnitus is not stable. I continue to develop new tones over time. My right ear, which already produces flute-like notes, sometimes develops a louder mid-range tinnitus on top of those.

I experienced a tinnitus reaction after about two weeks of nightly use of Mirtazapine. I woke up one morning to a loud white noise, louder than my regular tinnitus. It happened twice in one week, which was two times too many. Normally, I hear a sound like train wheels on steel, which prevents me from falling back asleep once I wake up.

I usually fall asleep from exhaustion and manage about four or five hours of sleep. But if I wake during the night, that is typically it. I am often awake by 3 or 4 AM. At that point, I take Temazepam or half a tablet of Mirtazapine to try to get two more hours of sleep.

I believe that the number of mitochondria responsible for breaking down chemicals, primarily in the liver, increases when dealing with repeated doses of drugs. This leads to reduced drug effectiveness over time. Temazepam lost some effectiveness after just one week. Most drugs, or their byproducts, are processed in a similar way, so a decrease in effectiveness is to be expected. Cross tolerance between different drugs is also a real possibility. It does not always happen, but it should be anticipated.

 

[Kam75]

What I can expect in the future is more hearing cell damage, leading to a broader frequency range of tinnitus and increased loudness. That is why I need to protect against all types of noise environments. Damage can occur not only in the high or low frequencies, but also in the mid-range, which would put the remaining functional cells at further risk.

You may be right about that. I've already come across this theory on Tinnitus Talk. It's neither reassuring nor optimistic to read, because it makes you realize how fragile and damaged our ears really are, and how easily their condition can deteriorate again.

I always wonder, how on earth do you all know so much about tinnitus? It's as if you had studied science or medicine!

It gives me the strange impression that tinnitus mainly affects intelligent people.

No doctor has ever given me as much precise information about tinnitus as I've found on Tinnitus Talk, and I live in a country where the medical system is fairly well developed.

 

[Mark F.]

You may be right about that. I've already come across this theory on Tinnitus Talk. It's neither reassuring nor optimistic to read, because it makes you realize how fragile and damaged our ears really are, and how easily their condition can deteriorate again.

I always wonder, how on earth do you all know so much about tinnitus? It's as if you had studied science or medicine!

It gives me the strange impression that tinnitus mainly affects intelligent people.

No doctor has ever given me as much precise information about tinnitus as I've found on Tinnitus Talk, and I live in a country where the medical system is fairly well developed.

On the other hand, I know more than a handful of people who have had tinnitus since their late teens or early twenties, mostly from military service. They report no further worsening in the past 25 to 35 years.

We are not necessarily doomed.

 

[Joeseph Stope]

Sorry to hear that you are in such a position, @Kam75. It feels like the world has gone mad.

Just last summer, my landlord gave me notice to leave after seven and a half years. With the way things are going, it has become very difficult to find a place to rent. It seems like there is a new population shift happening—from East to West, and from North to South.

Am I blaming the new arrivals? Not exactly. If I were to blame anyone, I might point to Vladimir Putin for his war, or to global climate change. But the point is, it is happening. Whatever you do or do not do, hold on to your apartment.

Living out on the street, exposed to traffic noise and the harshness of public life, is no place to be if you suffer from tinnitus and hyperacusis.

Against the odds, I managed to find a new place. I believe your tinnitus will likely improve over time, but you need a quiet place to stay—a place you can call home while the years pass.

Get letters from all the doctors and audiologists who have treated you. Then go—maybe with a lawyer, a social worker, or a local politician—to the social services office and apply for support. Ask for welfare or rent assistance while you are ill.

You have to plan it all in advance.