People with Dysacusis, Distortions or Loudness Hyperacusis — Describe Your Symptoms!

[Wouter De Blaere]

This has been my exact experience with Clonazepam and distortions/reactive tinnitus as well. I believe your theory is true, and something that reinforces this is the fact that my reactive tinnitus can randomly switch ears over days or weeks. Some elements of the distortions behave the same way. As you said, this points more to a brain issue rather than cochlear damage.

Have you tapered off Clonazepam completely? Sadly, it has stopped working for me, and I'll soon have to decide whether to taper off.

I tried to taper down but went too fast, and all the distortions came back. Unfortunately, my central nervous system couldn't handle it, so I increased the dosage again.

How long did you take Clonazepam before it stopped working? According to Dr. De Ridder, it should work for dysacusis for a lifetime…

 

[Cmspgran]

I tried to taper down but went too fast, and all the distortions came back. Unfortunately, my central nervous system couldn't handle it, so I increased the dosage again.

How long did you take Clonazepam before it stopped working? According to Dr. De Ridder, it should work for dysacusis for a lifetime…

It took about a year before it stopped working. However, I was only taking it a couple of times a week for a long time. It was only after a few months of taking 0.5 mg every day that it stopped working.

Regarding Dr. De Ridder, I respect him—he's well-informed, articulate, and knowledgeable. However, he does have a habit of contradicting himself at times. With this in mind, I take much of what he says with a grain of salt. His advice and opinions on Clonazepam are all over the place.

 

[GammonCity]

I am a bit of an outlier here since I only have loudness hyperacusis and no tinnitus. It has technically been a lifelong condition, but it only became debilitating in the last five years. Over that time, it has steadily worsened, and nothing has helped.

There is no physical problem with my ears, so they cannot fix anything structurally. Sound therapy is intolerable. Physical therapy just makes me feel sick. Medications universally make me suicidal. CBT feels like nonsense. Sitting around in relative quiet does not help, but at least it does not seem to make things worse.

Beyond everything being too loud, my main symptoms are mental fatigue and exhaustion, both of which worsen with noise exposure. On bad days, it is very difficult to get out of bed or do anything. Lack of sleep makes the hyperacusis worse. My sleep is completely disrupted—shifting circadian rhythm combined with hypersomnia and unusually long sleep times—but I have not had a sleep study yet to figure out why.

The possible causes are being born premature, the steroids they gave me in the NICU because of that, or an unspecified brain issue.

 

[delta784]

I am a bit of an outlier here since I only have loudness hyperacusis and no tinnitus. It has technically been a lifelong condition, but it only became debilitating in the last five years. Over that time, it has steadily worsened, and nothing has helped.

There is no physical problem with my ears, so they cannot fix anything structurally. Sound therapy is intolerable. Physical therapy just makes me feel sick. Medications universally make me suicidal. CBT feels like nonsense. Sitting around in relative quiet does not help, but at least it does not seem to make things worse.

Beyond everything being too loud, my main symptoms are mental fatigue and exhaustion, both of which worsen with noise exposure. On bad days, it is very difficult to get out of bed or do anything. Lack of sleep makes the hyperacusis worse. My sleep is completely disrupted—shifting circadian rhythm combined with hypersomnia and unusually long sleep times—but I have not had a sleep study yet to figure out why.

The possible causes are being born premature, the steroids they gave me in the NICU because of that, or an unspecified brain issue.

Steroids did the same thing to me.

 

[sophia1688]

That's pretty heartbreaking @Matchbox. I'm deeply sorry to read about your humming. My initial onset is a mystery but I came to the conclusion that it was the drug Fluconazole. Huge bummer.

How are you now, @vermillion?

 

[wontstopme93]

Weirdly enough, I was prescribed Clonazepam for tinnitus and dysacusis in October 2023. The dysacusis disappeared by about 95%.

I had additional noises like echoes, whooshing sounds, metallic tones added to sounds like church bells, clapping (even on TV), cars passing by, running water, the microwave, certain tones in music, coughing, and more. Every time I taper down the Clonazepam, these distortions return after a few weeks.

Because of this, I do not believe the issue is related to ear damage. Instead, I suspect the dorsal and ventral cochlear nuclei (DCN VCN) go into a hyperactive state when overloaded with anything resembling white noise. Since GABA, which Clonazepam enhances, reduces neuronal communication, lowering this hyperactivity seems to eliminate or significantly reduce the distortions.

Has anyone else experienced something similar?

I would be curious to hear if it is still working since the last time you posted. Did your tinnitus sounds also decrease? I think you are on to something with it being an overactive DCN or VCN. Do you think it would be possible to take natural supplements that increase GABA and achieve the same effect? Thanks.