Severe Tinnitus After Viral Meningitis/Encephalitis

[gray5kull]

Hi everyone,

I'm new here and hoping to connect with others who understand exactly how life-altering tinnitus can be.

Mine started suddenly in 2017, about two years after I survived a rare and nearly fatal case of shingles that led to viral meningitis with encephalitis. Doctors estimated the odds of this happening at less than 0.01 percent. The major hospital had no records of it ever occurring in someone else. The damage left me with permanent, severe tinnitus in my left ear, caused by cochlear hair cell damage from the meningitis at high frequencies. I have a 14,000 Hz hearing loss at 45 dB HL in my left ear, with additional loss at 10,000 Hz.

My tinnitus sounds like air leaking from a tire right next to my ear, or like a million crickets in a field. When I go for walks during the summer, the actual crickets blend with the tinnitus tone. It's a 10,000 to 14,000 Hz tone with a 5,000 to 7,000 Hz static noise layered over it.


My tinnitus profile:

• Loudness: Ranges from 8/10 to 10/10 on most days. I get rare "0/10" days—about 1 percent of the year—but they are usually followed by a loud rebound the next day. It's unpredictable. I might have one quiet day, then loud the next, but never multiple quiet days in a row. Sometimes, I go weeks without a break.
• TFI score: 92 percent. The worst impacts are emotional distress (100 percent), relaxation (100 percent), and cognitive interference.
• Not pulsatile: The volume I wake up with is the same as when I fell asleep, unless stress or other factors spike it.

What's helped so far:

• Neosensory Duo: After six months, I'm seeing slight improvement. More of my days now fall in the 4 to 8 out of 10 range.
• CBT/TRT training: I started six months ago. It's still early, but I'm committed. The sound therapy helps on certain days. VR sessions using a game called TRIPP have helped me with meditation, sleep, and calming down.
• CBD gummies and melatonin: These finally helped me improve my sleep after years of struggling.
• Clonazepam: I take 2 mg twice a day to help manage the anxiety. I also struggle with an anxiety disorder and panic attacks. My former HMO took me off Clonazepam a few years ago, and my tinnitus became a constant 10/10. It was also very difficult to come off the medication.

Why I'm here:

• To connect with others who have similar causes—meningitis or encephalitis damage, or ultra-high-frequency hearing loss
• To share what has worked (or failed) for me
• To find hope on the days when it feels too loud to bear
• Because reading and talking helps keep me grounded—I was on the verge of ending it a few years ago
• I just joined, but I'm also interested in the connection between ADHD and tinnitus. I've been diagnosed with ADHD, but the doctors haven't offered much help. I'm now pushing them to address it properly.

I've had a lot of medical issues, most of them since the meningitis, and dealing with them on top of daily life has been incredibly hard with this level of tinnitus. Thanks for reading. Just typing this out already feels like a small relief.