Do I Have Vestibular Hyperacusis? What Can I Do?

[pierre76]

After experiencing significant acoustic trauma in May 2023, I have been suffering from tinnitus, pain hyperacusis, tensor tympani syndrome, and, most notably, dizziness when exposed to sounds.

What's particularly curious is that the more intense the sound, the more severe the vertigo I experience, accompanied by a hard-to-describe weakness in my legs. It's so debilitating that sound therapy worsens it, and I can never complete the sessions. It feels as though the sound tenses something inside my ear, triggering the vertigo.

The closest condition I've found that matches my symptoms is Tullio's phenomenon, but after an MRI, it was confirmed that I don't have Superior Canal Dehiscence Syndrome.

I have consulted many healthcare professionals and have been dealing with this for a year and a half. Can anyone offer guidance regarding these vertiginous symptoms? The variety of symptoms is overwhelming, and I could really use some advice.

Here is my story, which I posted on another category here:

→ My Pain Hyperacusis and PTSD Testimony — Asking for Some Words of Encouragement to Carry On

Thanks to everyone.

 

[2049v]

most notably, dizziness when exposed to sounds.

You're the first person I've seen with this symptom besides myself. When I'm exposed to sounds, I start to feel unsteady, almost like I'm drunk. Unfortunately, even when I wear earplugs, I don't feel much of a difference, but sometimes I'm forced to wear them because otherwise, it's worse.

When did this issue of becoming dizziness due to sound exposure start for you? Have doctors been able to help with this? Have you experienced any improvement? Are you receiving any treatment for this? I would really appreciate it if you could answer these questions.

By the way, I read your story the first day you posted it, and it really broke my heart. I have a strong sense of justice, and as I was reading what happened to you, I felt my blood run cold. I hope that justice will prevail for you, and that you'll be able to share some good news with us.

By the way, did you receive early-stage treatments like steroid treatment, HBOT, etc.? I couldn't find any information on that.

 

[pierre76]

You're the first person I've seen with this symptom besides myself. When I'm exposed to sounds, I start to feel unsteady, almost like I'm drunk. Unfortunately, even when I wear earplugs, I don't feel much of a difference, but sometimes I'm forced to wear them because otherwise, it's worse.

When did this issue of becoming dizziness due to sound exposure start for you? Have doctors been able to help with this? Have you experienced any improvement? Are you receiving any treatment for this? I would really appreciate it if you could answer these questions.

By the way, I read your story the first day you posted it, and it really broke my heart. I have a strong sense of justice, and as I was reading what happened to you, I felt my blood run cold. I hope that justice will prevail for you, and that you'll be able to share some good news with us.

By the way, did you receive early-stage treatments like steroid treatment, HBOT, etc.? I couldn't find any information on that.

Indeed, I haven't found anyone else with these symptoms, and it's quite unfortunate because it's very disabling. What you describe is very similar to my experience—that feeling of drunkenness and weakness in the legs.

It all started with the acoustic trauma and hasn't improved since. Typically, this kind of issue occurs with Superior Canal Dehiscence Syndrome, but that's not the case for me. You should consider getting an MRI to check if you have it. I also believe that tensor tympani syndrome can cause these symptoms. In my case, that seems like the most accurate explanation, but even so, everyone has their doubts.

As for me, I'm going to start vestibular kinesiotherapy to see if it helps improve things a bit.

Thank you for your kind words about my story. Sometimes, it feels like I'm trapped in a nightmare I can't wake up from.

 

[2049v]

Sometimes, it feels like I'm trapped in a nightmare I can't wake up from.

For me, it's not just "sometimes"—it's like I've been trapped in a nightmare ever since this torture began. I'm even in a state that feels similar to depersonalization/derealization (DP/DR). My sense of reality is distorted; it's as if I'm perceiving the world in two dimensions, living behind a glass. However, since I don't have symptoms like anxiety or panic attacks, I don't believe this is due to any psychological or mental cause. I've never experienced anything this heavy or difficult in my life, but as I mentioned, I'm still trying to stay strong.

At the request of the ENT specialist, I also had an MRI of my head and ears, but nothing came up. I will be seeing a neurologist as well, and they may request another MRI—I'm not sure yet. I started having these ear issues and related problems after acoustic trauma, following exposure to loud noise. If you experience any improvement or recovery with any treatments, I'd appreciate it if you could let me know.