Sudden Hearing Loss Gave Me Tinnitus and Took My Life Away

[BlueMoon86]

It's been four and a half months since my hearing loss, which gave me awful tinnitus. In the first few weeks, I was like a zombie. I couldn't eat or sleep, and I cried all the time because of the noise. I couldn't leave my bedroom and the multiple sound therapy videos I surrounded myself with. I needed medication to sleep. I wanted to die. My whole world was music, video games and the solace of my own mind (I have ASD), and all that had been taken from me overnight.

I slowly started to get better as the weeks went on; I stopped needing pills to sleep, started talking to my family again, and even played some video games occasionally. I improved my diet and started eating healthy and taking supplements. I still used masking quite a bit, but sometimes, I was able to get back to sleep if I woke up without it. It felt like by lying on the affected ear, having a low-level masker playing, and concentrating on the tinnitus, I could get it to fade.

All that changed last month. I had a bunch of various symptoms that suggested MS and was back to spending several weeks in fight or flight mode. My MRI was clean, but my symptoms have persisted (my GP now thinks it is a "functional neurological disorder"), and recently, I developed painful throat muscles, chest pressure, and a rattling lung. A new searing high-pitched hissing/cricket noise has spread across my head in the last few days like some kind of disease, even overtaking the low-frequency hum/buzz from the hearing loss. I thought I knew what terrible tinnitus was before, but what I had in December was like a blessing in comparison. I'm totally lost and suicidal again. I can't sleep even with medication. My whole head screams.

My family is tired of hearing about it, but they can't understand what it's like to be utterly unable to have mental comfort. So I've come here where people do understand. Thanks for reading my story.

 

[Supersix]

Have you tried taking Remeron (Mirtazapine) and Klonopin (Clonazepam)? If not, I highly recommend taking Remeron at night to aid sleep. It will take a week or so for your body to adjust and stick with it.

 

[TheCapybara]

Hey @BlueMoon86, I'm really sorry to hear you're struggling. I can completely relate to how it all started. I also have autism, and my whole world has always been games, music, and peace of mind where I can retreat when life's too much. That all changed when I developed sudden hearing loss overnight, probably thanks to headphone noise, and it took me a very long time to improve from distortions so I could enjoy life again without fear.

I hope you'll improve and recover in the upcoming months so that you can enjoy everything you want to do again.

 

[sspencermo]

I just want to second @Supersix's recommendation to try Mirtazapine. It allowed me to sleep, and that made everything else more manageable.

Wishing you all the best.

 

[BlueMoon86]

I just wanted to update you:

Clonazepam is amazing. I didn't want to take it, but I had a rubbish day, and my head was roaring. I wasn't sure it would even do anything because, in the past, I had Diazepam, and it did nothing. I thought, at best, it would maybe make me not care about the noise, but no... 1 mg took my 10 to a 2. My roaring wind/deafening hum became a whisper for hours.

I know I can't take it frequently, so it's going to be a once-a-week/fortnight treat for me. Maybe it'll keep me holding on long enough for some kind of real treatment.

 

[RunningMan]

I just wanted to update you:

Clonazepam is amazing. I didn't want to take it, but I had a rubbish day, and my head was roaring. I wasn't sure it would even do anything because, in the past, I had Diazepam, and it did nothing. I thought, at best, it would maybe make me not care about the noise, but no... 1 mg took my 10 to a 2. My roaring wind/deafening hum became a whisper for hours.

I know I can't take it frequently, so it's going to be a once-a-week/fortnight treat for me. Maybe it'll keep me holding on long enough for some kind of real treatment.

1 mg is pretty potent for Clonazepam. That's 4 times as potent as my 0.5 mg dose of Lorazepam, plus it has a much longer half-life, resulting in a higher concentration of the benzo in your system longer. I avoid taking Lorazepam much because it can build tolerance and dependency quickly, plus there is a rebound effect when you come down from the benzo. You might want to try reducing your Clonazepam dose to 0.5 mg, which is still twice as potent as my Lorazepam.

If you have trouble sleeping, the Mirtazapine low-dose recommendations might be helpful, especially if the weight gain side effect isn't too concerning.

 

[Supersix]

I just wanted to update you:

Clonazepam is amazing. I didn't want to take it, but I had a rubbish day, and my head was roaring. I wasn't sure it would even do anything because, in the past, I had Diazepam, and it did nothing. I thought, at best, it would maybe make me not care about the noise, but no... 1 mg took my 10 to a 2. My roaring wind/deafening hum became a whisper for hours.

I know I can't take it frequently, so it's going to be a once-a-week/fortnight treat for me. Maybe it'll keep me holding on long enough for some kind of real treatment.

1-2 mg of Mirtazapine and 0.25 mg of Clonazepam at night is the perfect cocktail for me.

 

[BlueMoon86]

1 mg is pretty potent for Clonazepam. That's 4 times as potent as my 0.5 mg dose of Lorazepam, plus it has a much longer half-life, resulting in a higher concentration of the benzo in your system longer. I avoid taking Lorazepam much because it can build tolerance and dependency quickly, plus there is a rebound effect when you come down from the benzo. You might want to try reducing your Clonazepam dose to 0.5 mg, which is still twice as potent as my Lorazepam.

If you have trouble sleeping, the Mirtazapine low-dose recommendations might be helpful, especially if the weight gain side effect isn't too concerning.

I am on Mirtazapine. My doctor put me up to 30 mg "for my mood," but ever since then, I have had trouble sleeping, so I've gone back down to 15 mg with a view to getting to 7.5 mg after that. The lower the dose, the better. What's the point in trying to improve my mood if I can't sleep?

I'm also considering 0.5 mg of Clonazepam next time I have some, but my anxiety and roaring tinnitus are both extreme at the moment, so I hope it's enough to take the edge off every now and then.

 

[BlueMoon86]

Clonazepam is no longer amazing. I couldn't stick to "once or twice a week," and it's lost effectiveness. The first time I took it, I fell asleep in the afternoon, which I haven't been able to do since before this started. The second time I took it, I had a couple of drinks, and I remember playing with my mum's puppy and the tinnitus being a whisper in my ear. That's not happening anymore. I have given them to my mum, but I keep begging her for them, and I am drinking heavily because it puts the sound in the background and makes me not care for a while. It's like a vacuum cleaner in my head now, and I'm scared.

 

[BlueMoon86]

Another update (if anyone's interested): Clonazepam still works, but I cannot be physically active and expect it to do its thing. If I nap, be still, and take things easy, my louder-than-a-helicopter droning will fade to the background as a mildly annoying wind. That sucks because I want to go out and do things but from day one my tinnitus has been highly reactive to the movement of my body rather than outside sound. I'm still drinking most days because vodka also puts the tinnitus into the background. I know I'm playing with fire here, but if I get burnt hard enough, I won't have to hear this sound anymore.

 

[RunningMan]

You mentioned reducing your Mirtazapine dose. What dose did you get down to? Is that working better for your sleep now?

 

[BlueMoon86]

You mentioned reducing your Mirtazapine dose. What dose did you get down to? Is that working better for your sleep now?

I reduced the Mirtazapine back down to 15 mg, but it's not working now. The tinnitus blares and fills my whole head (I need 60+ dB level sound to even match it now when sound therapy in the 40s dB was enough before), and sleep just doesn't come unless I drink alcohol or take Clonazepam.

 

[Juliane]

Hi @BlueMoon86,

I'm sorry to hear about your sudden hearing loss and struggle with tinnitus. It must be really difficult to deal with constant noise.

Do you know what caused your hearing loss? Also, may I ask how old you are?

Sending you hugs,
Juliane

 

[BlueMoon86]

Hi @BlueMoon86,

I'm sorry to hear about your sudden hearing loss and struggle with tinnitus. It must be really difficult to deal with constant noise.

Do you know what caused your hearing loss? Also, may I ask how old you are?

Sending you hugs,
Juliane

I have no idea what caused my hearing loss @Juliane, I just woke up with it one day and I was one of the unlucky ones for whom steroids didn't help. It's low frequency which I recently discovered is not the norm for hearing loss. I'm 38. I was 37 when it happened.

 

[BlueMoon86]

I had another hearing test yesterday. There's not much change at all, but the tinnitus is far worse than when my left ear initially died. They wouldn't let me have a copy, so I knocked this template up (badly) in MS Paint. That's it. That's what ruined my life. It's not even nearly as bad hearing loss as I've seen others have, but it seems they got lucky with their tinnitus because I see even people with profound loss say, "I only notice it in a quiet room" or "I only hear it when I think about it" and I just don't get it. My roaring/droning blares to such a degree that it could never be anything other than the main soundtrack of my life.

 

[Norm23]

I had another hearing test yesterday. There's not much change at all, but the tinnitus is far worse than when my left ear initially died. They wouldn't let me have a copy, so I knocked this template up (badly) in MS Paint. That's it. That's what ruined my life. It's not even nearly as bad hearing loss as I've seen others have, but it seems they got lucky with their tinnitus because I see even people with profound loss say, "I only notice it in a quiet room" or "I only hear it when I think about it" and I just don't get it. My roaring/droning blares to such a degree that it could never be anything other than the main soundtrack of my life.

View attachment 56945

You should see my audiogram. My hearing loss starts from 20 dB and then continues to go down to 100 dB.

My tinnitus is at 10,000 Hz, and is loudness matched at 77 dB.

 

[BlueMoon86]

You should see my audiogram. My hearing loss starts from 20 dB and then continues to go down to 100 dB.

My tinnitus is at 10,000 Hz, and is loudness matched at 77 dB.

It doesn't matter about severity at this point, to be honest. Rest assured, my man, I can't hear shit except roaring, droning low-frequency tinnitus from that ear, and it's not far off yours in terms of loudness at its height.

If you have a profound loss at high frequencies, could you not look into cochlear implants? They are basically the only thing that has a chance of helping hearing loss-related tinnitus.

 

[Justin Jones]

@BlueMoon86, does your low-frequency tinnitus sound like a giant fan?

 

[BlueMoon86]

@BlueMoon86, does your low-frequency tinnitus sound like a giant fan?

It changes. Sometimes, it sounds like a small airplane propeller next to my ear, sometimes like a roaring wind blowing but with an electric feel. Most of the time, a low electric droning at 200-250 Hz sounds like a distorted version of the Jaws theme; there are two tones to it. I can hear a massive sound above hairdryers, fans, vacuums, and in the car. It's so intense that I sometimes feel like my ear recoils from the sound.

Screaming high-frequency tinnitus must suck, but low-frequency tinnitus is no easier to bear.

 

[Utdmad89]

It changes. Sometimes, it sounds like a small airplane propeller next to my ear, sometimes like a roaring wind blowing but with an electric feel. Most of the time, a low electric droning at 200-250 Hz sounds like a distorted version of the Jaws theme; there are two tones to it. I can hear a massive sound above hairdryers, fans, vacuums, and in the car. It's so intense that I sometimes feel like my ear recoils from the sound.

Screaming high-frequency tinnitus must suck, but low-frequency tinnitus is no easier to bear.

All tinnitus sucks.

 

[Justin Jones]

It changes. Sometimes, it sounds like a small airplane propeller next to my ear, sometimes like a roaring wind blowing but with an electric feel. Most of the time, a low electric droning at 200-250 Hz sounds like a distorted version of the Jaws theme; there are two tones to it. I can hear a massive sound above hairdryers, fans, vacuums, and in the car. It's so intense that I sometimes feel like my ear recoils from the sound.

Screaming high-frequency tinnitus must suck, but low-frequency tinnitus is no easier to bear.

You and I have a lot in common. Your symptoms closely match mine.

I tell people it sounds like a small prop plane circling high overhead. That's just one of the layers. Fans and propellers are similar, obviously. The way you describe it sounds like the Jaws theme, which makes me think you are hearing a 'beating tone' or 'beating interference'. I am experiencing the same thing.

Have you found others around you with similar symptoms?

 

[Supersix]

It changes. Sometimes, it sounds like a small airplane propeller next to my ear, sometimes like a roaring wind blowing but with an electric feel. Most of the time, a low electric droning at 200-250 Hz sounds like a distorted version of the Jaws theme; there are two tones to it. I can hear a massive sound above hairdryers, fans, vacuums, and in the car. It's so intense that I sometimes feel like my ear recoils from the sound.

Screaming high-frequency tinnitus must suck, but low-frequency tinnitus is no easier to bear.

Try drinking Hydrogen water. To get the best results, buy a top-of-the-line bottle; the cheap Chinese ones are garbage. I have an Echo Go.