2 Years of Somatic Tinnitus with Neck and TMJ Involvement: Looking for Advice and Experiences

[matthewm]

Hi all,

I wanted to share my tinnitus history and see if anyone has experienced anything similar, or has advice on what kind of specialists might help. I've been dealing with tinnitus for a while now. Despite extensive testing, I still haven't found a clear explanation, but I strongly suspect a somatic cause related to the jaw, neck, or upper body.


Right Ear – Since December 2022

• It started suddenly with a constant high-pitched ringing.
• There was no obvious trigger: no sound trauma, no stress, no neck or head injury.
• Hearing tests and an MRI came back normal.
• The tinnitus in the right ear has stayed mostly the same since onset — consistent and unchanging.
• I had a TMJ bite inspection from a specialized dentist, which didn't reveal anything significant.

Left Ear – Since February 2024

This ear has been more complex.

• It began with a low-frequency hearing loss and a soft whooshing (non-pulsatile) sound in the mornings.
• Over time, this developed into a deep low-frequency sound (below about 60 Hz) that grew louder as the day progressed.
• The sound often reset overnight, disappearing in the morning, but returned during the day and typically increased in intensity as the day went on.
• It felt like a physical vibration, almost like a subwoofer inside my head.
• The whooshing would fade as the low-frequency hum took over.
• At its quietest, it felt like a faint buzzing behind the eardrum. At its worst, it was overwhelming and seemed to vibrate the entire side of my head. The volume can sometimes be quite frightening, and it has taken a serious toll on my quality of life.

Modulation and Patterns

• Neck movement, especially leaning the head backward, could sometimes stop the sound — but only when it was starting up or fading out, and only while the neck remained in that position.
• Resting the neck on a pillow for extended periods could also stop the sound, which may explain why it often disappeared after sleep.
• When this modulation is possible, I can reliably stop and start the sound with neck positioning. I can hear the buzzing fade in and out in response to the movement.
• Certain external sounds, such as voices or the sound of urinating into water, would stop the tinnitus temporarily — not just mask it, but actually pause it while the external sound was present.
• When this happened, it sometimes triggered a strange sensation, like the eardrum was flapping or spasming, leading to a suspicion of middle ear myoclonus.

Testing and Treatment (Left Ear)

• Multiple hearing tests were done. Some showed low-frequency loss in the left ear, others did not.
• Another MRI came back normal. A Eustachian tube inspection using a camera also appeared clear.
• Botox injections were administered into the middle ear muscles, but there was no change, which suggests that middle ear myoclonus was not the cause.

Since October 2024

• The low-frequency sound has become almost constant, though quieter than before.
• It typically no longer resets overnight, except on rare occasions. Now it hums persistently throughout the day and night with very little fluctuation.
• Occasionally, it disappears for a few days, only to return much louder than before.
• Recently, high-pitched ringing has begun in both ears. In the left ear, it comes and goes, while in the right ear it has remained consistent.

My Current Thinking

Given how the low-frequency tinnitus responds to neck movement and muscle rest, I suspect a somatic cause — possibly muscular tension, nerve irritation, or something related to the jaw or upper spine. There has been no ear trauma, no progression of hearing loss, and no explanation from standard ENT evaluations.

I am scheduled to see a TMJ physiotherapist at the end of the month. I've also recently committed to daily stretching, with the long-term goal of becoming much more flexible overall. Maybe that will help — I'm hopeful.


Looking For:

• Has anyone experienced a similar progression, from fluctuating low-frequency tinnitus to a constant hum?
• Has anyone found relief through physical therapy, TMJ treatment, or neck or postural work?
• Are there any specialists you would recommend I explore next?

I've held off on posting here for a long time because reading very negative stories in the past has worsened my mental state. While I genuinely value feedback and want to connect with others, I'm trying to be mindful of what I expose myself to. If you're thinking of sharing something especially discouraging or hopeless, I kindly ask that you consider holding back. I hope that makes sense.

Thanks in advance for reading — I'd really appreciate hearing from anyone who has experienced anything even remotely similar.