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

[Kam75]

I've been taking Dayvigo (Lemborexant) for sleep for a couple of months, and it seems to work well when combined with 3 mg of Melatonin and 150 mg of Magnesium Glycinate. Good luck.

I haven't found any references suggesting that it causes or worsens tinnitus, and it hasn't affected my tinnitus so far.

Tinnitus Talk members often mention Dayvigo or Trazodone. Unfortunately, neither of them is available in France.

I've been taking Mirtazapine for almost five years. On some nights, I add Alimemazine, Quetiapine, or Melatonin, but sadly this combination no longer works for me.

My tinnitus is so intense that I can't sleep. My psychiatrist keeps urging me to try an SSRI-type antidepressant like Venlafaxine, but according to Tinnitus Talk members, SSRIs may worsen tinnitus.

I no longer know what to do to get any sleep...

 

[RunningMan]

I tried DORA medications Quviviq and Dayvigo over the course of a full year, though not at the same time, and they didn't help much, especially later in the night when I had the most trouble sleeping.

Ambien works much better for me. I just take a piece of a pill sublingually as needed during the night.

I also tried various doses of Melatonin and Magnesium Glycinate during that time, but they didn't help at all, just like many other supplements people recommend for sleep.

Venlafaxine is an SNRI, not an SSRI, but it can still increase tinnitus and cause insomnia.

Quviviq is apparently available in France. It's in the same class, DORA, as Dayvigo.

 

[kingsfan]

Tinnitus Talk members often mention Dayvigo or Trazodone. Unfortunately, neither of them is available in France.

I've been taking Mirtazapine for almost five years. On some nights, I add Alimemazine, Quetiapine, or Melatonin, but sadly this combination no longer works for me.

My tinnitus is so intense that I can't sleep. My psychiatrist keeps urging me to try an SSRI-type antidepressant like Venlafaxine, but according to Tinnitus Talk members, SSRIs may worsen tinnitus.

I no longer know what to do to get any sleep...

Have you always had some level of tolerance to Mirtazapine and Quetiapine?

Both of those knock me out for a full 24 hours. My psychiatrist said I have a sensitivity to those classes of medications. I can't take them for sleep, not because they don't work, but because they work too well.

 

[Kam75]

Have you always had some level of tolerance to Mirtazapine and Quetiapine?

Mirtazapine at 22.5 mg helped me get a halfway decent night's sleep, but that was before I made the mistake of resuming a social life.

I recently tried Quetiapine for the first time, but it did not work, so I stopped taking it.

Yet on Tinnitus Talk, I was told that the combination of Mirtazapine and Quetiapine was supposed to knock me out.

It really shows how intense my tinnitus must be if even that combination does not help me sleep at all.

 

[kingsfan]

Mirtazapine at 22.5 mg helped me get a halfway decent night's sleep, but that was before I made the mistake of resuming a social life.

I recently tried Quetiapine for the first time, but it did not work, so I stopped taking it.

Yet on Tinnitus Talk, I was told that the combination of Mirtazapine and Quetiapine was supposed to knock me out.

It really shows how intense my tinnitus must be if even that combination does not help me sleep at all.

A dose of 22.5 mg may be too high for the optimal sedative effect. Mirtazapine's H1 receptor antagonism tends to plateau at lower doses, while its noradrenergic activation increases with higher doses, which can actually keep you more alert.

I'd suggest trying 15 mg, or possibly even lowering it to 7.5 mg.

 

[Hyperacusis]

Mirtazapine at 22.5 mg helped me get a halfway decent night's sleep, but that was before I made the mistake of resuming a social life.

I recently tried Quetiapine for the first time, but it did not work, so I stopped taking it.

Yet on Tinnitus Talk, I was told that the combination of Mirtazapine and Quetiapine was supposed to knock me out.

It really shows how intense my tinnitus must be if even that combination does not help me sleep at all.

Hi Kam75,

I think you're French like me. I read your story, and I truly hope things will settle down for you. Why don't you consider going on sick leave and applying for an RQTH?

Also, I read that your hyperacusis improved over time and that you recovered from it. May I ask how you managed to heal? How severe was your hyperacusis? I'm currently stuck at home with tinnitus that mimics every voice message I hear, along with severe hyperacusis—car noises sound like airplanes, so I have to cover my ears.

Thanks in advance, and take care.

 

[Kam75]

A dose of 22.5 mg may be too high for the optimal sedative effect. Mirtazapine's H1 receptor antagonism tends to plateau at lower doses, while its noradrenergic activation increases with higher doses, which can actually keep you more alert.

I'd suggest trying 15 mg, or possibly even lowering it to 7.5 mg.

I'm aware of this particular use of Mirtazapine. The problem is that every time I've tried reducing it to 15 mg, I've had to go back up to 22.5 mg after about a week, because my sleep becomes catastrophic again.

Hi Kam75,

I think you're French like me. I read your story, and I truly hope things will settle down for you. Why don't you consider going on sick leave and applying for an RQTH?

Also, I read that your hyperacusis improved over time and that you recovered from it. May I ask how you managed to heal? How severe was your hyperacusis? I'm currently stuck at home with tinnitus that mimics every voice message I hear, along with severe hyperacusis—car noises sound like airplanes, so I have to cover my ears.

Thanks in advance, and take care.

Salut @Hyperacusis.

I already have an RQTH, but I'm recognized as a disabled worker with a disability rating between 50 and 79%, so it doesn't give me any meaningful rights.

I don't really want to go on sick leave, because work is all I have left. If I lose my job, I lose absolutely everything.

As for my hyperacusis, it has always been mild and only in my left ear, I think. I'm not sure it has gone away, but I believe I've gotten used to it over time. There are still sounds that hurt my ears, though, like the clatter of dishes.

Hyperacusis can improve. I've read many testimonials about that. I recently read Dr. Philippe Peignard's book Bien vivre avec des acouphènes (Living Well with Tinnitus), which explains that you shouldn't overprotect your ears if you have hyperacusis, because that actually maintains it and can even make it worse. It becomes counterproductive.

You have to gradually get used to everyday sounds that aren't supposed to harm your ears. He's not the only one who says this.

Best wishes.

 

[lostb1t]

Tinnitus Talk members often mention Dayvigo or Trazodone. Unfortunately, neither of them is available in France.

I've been taking Mirtazapine for almost five years. On some nights, I add Alimemazine, Quetiapine, or Melatonin, but sadly this combination no longer works for me.

My tinnitus is so intense that I can't sleep. My psychiatrist keeps urging me to try an SSRI-type antidepressant like Venlafaxine, but according to Tinnitus Talk members, SSRIs may worsen tinnitus.

I no longer know what to do to get any sleep...

There's a liquid form available for a lot of drugs, which could allow for a slow, gradual increase.

Mirtazapine is also an antidepressant, so it depends on how much the other medications help. I do agree, though, that lowering the dosage of Mirtazapine might be helpful.

 

[RunningMan]

A couple of people in this thread mentioned needing 30 mg of Mirtazapine to sleep, and then it didn't last.

Definitely use caution with Mirtazapine (and this).

 

[Kam75]

Hi folks!

Just a little update about my situation.

I have been taking only 7.5 mg of Mirtazapine to sleep for a week now. Before that, I was taking up to 45 mg (the maximum dose) and then gradually reduced it to the minimum dose.

I can clearly see a difference. My sleep is not as catastrophic as it used to be before lowering the dose to 7.5 mg. It is true that this medication works better for sleep at very low doses.

I also take either one Alimemazine tablet or one Melatonin tablet to help me sleep.

My sleep is still far from perfect. I wake up about fifteen times a night and often have red eyes, but overall my nights are a little more restful, and I can get through a workday more easily.

In short, I recommend that anyone who struggles to sleep because of tinnitus, like me, try the minimum dose of Mirtazapine.

I hope this effect will last as long as possible.

Good luck, everyone!

 

[alwaysmasking]

Congratulations on your better sleep. Here's to more improvement! These things take time, so please hang in there, mon ami.

 

[Kam75]

Congratulations on your better sleep. Here's to more improvement! These things take time, so please hang in there, mon ami.

Thank you @alwaysmasking, but unfortunately the little "miracle" only lasted one week...

I didn't want to talk about it, as I didn't want to spread negativity again, but after one week of using 7.5 mg of Mirtazapine, I had to increase the dose again to 15 mg. And it still doesn't help me sleep.

I am completely desperate. It's been two years since my tinnitus got much worse, and nothing works to help me sleep anymore.

 

[delta784]

I still think I am the unluckiest bastard.

 

[Vincent R]

Thank you @alwaysmasking, but unfortunately the little "miracle" only lasted one week...

I didn't want to talk about it, as I didn't want to spread negativity again, but after one week of using 7.5 mg of Mirtazapine, I had to increase the dose again to 15 mg. And it still doesn't help me sleep.

I am completely desperate. It's been two years since my tinnitus got much worse, and nothing works to help me sleep anymore.

My tinnitus is very loud. It has gradually become worse because I failed to avoid additional noise traumas. I am very sensitive to stress, so I am quite familiar with tormenting nights.

Right now, my ears are screaming worse than ever. On Friday evening, I fell asleep from exhaustion, and during that time an after-work party started on the floor above. It seems I slept for several hours with loud bass noise in the background. I had gone to bed with double hearing protection, which made this possible. Of course, my ears could not handle the low-frequency onslaught.

I am a bit older than you, 46, so in that sense you are more unfortunate than I am. You have more years ahead of you to endure this.

I do not take any sleep medicine. Instead, I practice a special kind of body-presence meditation that forces the muscles to relax and helps me fall asleep. It has always worked so far, even when my fight-or-flight response is at its peak. The fact that I am able to keep functioning continues to surprise me.

It is not for everyone. It is very difficult to meditate with intense anxiety, but I can guide you to suitable literature if you are interested.

 

[lostb1t]

Thank you @alwaysmasking, but unfortunately the little "miracle" only lasted one week...

I didn't want to talk about it, as I didn't want to spread negativity again, but after one week of using 7.5 mg of Mirtazapine, I had to increase the dose again to 15 mg. And it still doesn't help me sleep.

I am completely desperate. It's been two years since my tinnitus got much worse, and nothing works to help me sleep anymore.

I do want to point out that Mirtazapine is prescribed off-label for sleep. There are many other factors involved, and changing dosages will require brain adjustment.

When I tapered Mirtazapine, I would sleep better for the first few days, but after a week, the withdrawal hit, and my sleep became worse for a few weeks.

 

[trevl]

I have experienced this as well.

There is a state of brain activity between being asleep and being awake. If that transition lasts long enough, you can become aware that you are not fully asleep but also not entirely awake. I have only experienced this a few times. It is definitely not a regular occurrence, and I made notes when it happened. During this state, there is silence.

By the time you move a muscle, perhaps in your face, arm, or leg, your sleep state ends completely, and the tinnitus that was present even while you were asleep becomes audible again. This happens before you even open your eyes. Your brain has shifted fully into wakefulness, and the tinnitus that was always there returns to your awareness.

On a few occasions, my high and low-frequency pure tones have remained silent for longer periods, lasting several seconds but always under one minute. However, the high-frequency white noise tinnitus in my left ear comes back very quickly once I wake up. That is especially difficult, because for a short time, the white noise is not masked by the other pure tone tinnitus, which makes it more noticeable and intense.

I had previously mentioned that my white noise tinnitus was caused by a reaction to Mirtazapine. But I now suspect that Mirtazapine may have suppressed my pure tone tinnitus, which in turn made the white noise tinnitus more prominent upon waking. All of this reinforces the idea that tinnitus originates in the brain rather than in the ears.

The statement above is not quite accurate. Tinnitus originates in the brain and is always present. It is the brain continuously influencing itself.

The most likely explanation is that the overactive areas of the brain that cause tinnitus are in conflict with the brain regions that control sleep. If the sleep mechanisms take control, the effects of tinnitus are reduced during sleep. But because you are unconscious, you do not hear the tinnitus or the silence. The tinnitus is simply being suppressed by your sleeping brain.

An update on the tinnitus and sleep problem.

This morning, as I woke up, I noticed my tinnitus was at a reduced volume. As I became more awake, the high-frequency tinnitus grew progressively louder until it reached its usual high volume. The whole process took only a few seconds.

It seems that, at least in my case, sleep actively suppresses tinnitus. Once my brain shifts back into an awake state, the tinnitus returns to its typical high frequency and high volume. I can't say whether this will happen again or if it is something I can use to help me get adequate sleep.

'Sleep suppression of tinnitus' seems to be discussed in this report (attached below), where they consider that "this may be because the brain activity that happens during the deepest sleep actually suppresses tinnitus."

Tinnitus Seems Somehow Linked to a Crucial Bodily Function

Around 15 percent of the world's population suffers from tinnitus, a condition which causes someone to hear a sound (such as ringing or buzzing) without any external source.

www.sciencealert.com

 

[Kam75]

I still think I am the unluckiest bastard.

Hi @delta784, we are both terribly unlucky. You developed this cruel disease without EVER having been to a party, and I developed it despite ALWAYS wearing hearing protection, including custom-made earplugs. We lost the lottery. We must be a tiny minority who developed tinnitus undeservedly, which adds to the anger we feel in our daily lives.

This morning, as I woke up, I noticed my tinnitus was at a reduced volume. As I became more awake, the high-frequency tinnitus grew progressively louder until it reached its usual high volume. The whole process took only a few seconds.

HI @trevl, before my tinnitus worsened two years ago, I used to experience the same thing at night when I woke up: my tinnitus disappeared or was almost inaudible for a few seconds or even a minute, before returning to the normal state.

Since my tinnitus worsened, I no longer experience this sensation. I have absolutely no moments of peace. My tinnitus is like sirens going off 24/7.