Hi,
I'm Lucile. I'm French and 31 years old. I have been hard of hearing since childhood and have worn hearing aids for a long time.
I've always had a bit of mild tinnitus in my ears, but it never bothered me. I got used to it when I was young.
But over the past few weeks, something completely different has happened.
It started very suddenly, overnight, with a very loud alarm-like tinnitus in one ear.
After a few days, that alarm faded, but it was replaced by something much worse: a continuous noise inside my head. This sound is not in my ears. It feels central. Sometimes it is on the right side, sometimes it floats, or feels centered in my skull.
It can sound like a distant lawnmower or a vibration, and it is present about seventy percent of the day, sometimes even more.
Occasionally, I get short breaks where it fades or disappears for one or two hours.
The intensity changes depending on my posture, like when I lie down, turn my head, or stretch, but the sound never fully stops. It cannot be masked with white noise, and my hearing aids do not reduce it at all.
It feels like it is being generated directly inside my brain.
I was hospitalized early on because the internal noise was so intense I felt like I was going to lose my mind. The ENT I saw at the hospital mentioned central auditory system hyperactivity and said that, to him, it is a type of tinnitus.
But honestly, I find it very hard to believe this is just tinnitus.
I am now on anti-epileptic medication to calm the brain, but after two weeks, the noise is still there and still very intense at times.
I feel very alone. I keep searching for other people who describe head-based noise like mine, but I find almost nothing.
If you have experienced something similar—not ear tinnitus, but fluctuating noise generated inside your head that began suddenly and changes with posture—please let me know.
Even just one reply would help me feel less alone.
Thank you
I'm Lucile. I'm French and 31 years old. I have been hard of hearing since childhood and have worn hearing aids for a long time.
I've always had a bit of mild tinnitus in my ears, but it never bothered me. I got used to it when I was young.
But over the past few weeks, something completely different has happened.
It started very suddenly, overnight, with a very loud alarm-like tinnitus in one ear.
After a few days, that alarm faded, but it was replaced by something much worse: a continuous noise inside my head. This sound is not in my ears. It feels central. Sometimes it is on the right side, sometimes it floats, or feels centered in my skull.
It can sound like a distant lawnmower or a vibration, and it is present about seventy percent of the day, sometimes even more.
Occasionally, I get short breaks where it fades or disappears for one or two hours.
The intensity changes depending on my posture, like when I lie down, turn my head, or stretch, but the sound never fully stops. It cannot be masked with white noise, and my hearing aids do not reduce it at all.
It feels like it is being generated directly inside my brain.
I was hospitalized early on because the internal noise was so intense I felt like I was going to lose my mind. The ENT I saw at the hospital mentioned central auditory system hyperactivity and said that, to him, it is a type of tinnitus.
But honestly, I find it very hard to believe this is just tinnitus.
I am now on anti-epileptic medication to calm the brain, but after two weeks, the noise is still there and still very intense at times.
I feel very alone. I keep searching for other people who describe head-based noise like mine, but I find almost nothing.
If you have experienced something similar—not ear tinnitus, but fluctuating noise generated inside your head that began suddenly and changes with posture—please let me know.
Even just one reply would help me feel less alone.
Thank you
