Tinnitus poll: Do you experience it?

Do you suffer from tinnitus that can't be attributed to a particular cause?

  • Yes

    Votes: 102 77.9%
  • No

    Votes: 29 22.1%

  • Total voters
    131
Does anyone else experience pulsatile tinnitus?

Yes, me.

I have "ordinary" tinnitus which I've had for decades. It's a high-pitched whine that never goes away, although it can worsen or get better at random intervals for no reasons I've ever identified. In recent years I had a hearing test which was disturbed by the tinnitus - the audiologist could tell that I was responding to my own tinnitus rather than the sounds she was sending into my ears. She could even tell what frequency my tinnitus was. I actually adapted to this tinnitus quite quickly. It was distressing for a while but since it isn't a noise that belongs in normal life, and nor does it occur during normal speech, I could learn to ignore it quite easily.

A few years ago I developed a new noise - a low pitched drone - and this can occur in normal life and so my hearing was disturbed as a result. It made me suicidal for a few weeks, but thankfully I learned about using water and wind sounds at night to cover up the tinnitus. Once I could sleep again my suicidal feelings went away. I'm still conscious of the low-pitched noise, and it still interferes with my hearing but it no longer has the power to drive me mad.

I also have eustachian tube dysfunction, particularly badly in my right ear. My ear feels full, often it feels as though it is under pressure, it hurts-but-doesn't, if that makes any sense. It is uncomfortable. At its worst I also hear crackles and pops. The treatment for this condition is steroid nasal sprays which I've tried several times. It's almost 100% useless for me. It reduces the crackles and the pops for a few days, but does nothing about any of the other symptoms, and certainly doesn't improve my hearing in that ear.

The pulsatile tinnitus - I have no idea when that first developed. A long time ago, I think. I assumed for many years that everyone could hear their heartbeat, and it would get louder if they did something that raised the speed of it - a few seconds of running, going up flights of stairs. If I get really physically stressed - walking up a hill, for example - my heartbeat gets so loud that it drowns out everything else. But even while sitting in a chair doing nothing physical, I can hear it. It never stops, obviously. Along with all these other issues I can hear myself chew so loudly that I can't hold a conversation during a meal. There have been a couple of occasions when I can hear my own blinking. Edit : And I can hear myself walking - my own footsteps prevent me having conversations too.

I suffer from communicating hydrocephalus. This was discovered by accident about 5 - 6 years ago, and scans showed that it was long-standing, and most likely developed in the womb, during infancy or childhood. I now wonder if it is the cause of some or all of my ear-related problems.

What I really want, in the short term, is my eustachian tube cleaned out. And I wonder whether I will recover any hearing in my right ear if I got it done. But I don't know how to persuade a doctor that this needs to be done.
 
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I had tinnitus in one ear until a few weeks ago. I didn't even know it was reversible.

As to what caused it, I always thought it was probably repeated ear infections as an adult. It did develop during my LC period (pre-ME/CFS), but I don't think it had anything to do with it. It has been consistent for years, but it has always been fairly quiet and low-pitched and it never bothered me. I can't even pinpoint when it stopped, but it was very recent and surprisingly I think the reason was stress. I wouldn't be surprised if it came back though. Even more surprisingly I think this "stress" temporarily improves my ME/CFS, but it could also be coincidence or the weather.
 
Yes, worse or at least more noticeable the worse I am. When I’m at my best I’m not very aware of it but it is still there. Given I spent time with unprotected ears in loud places (clubs and music venues with big speaker systems and motorsport events) it wouldn’t be surprising if I had it anyway. But it seems to have started or become apparent when I fell ill.
 
Both ears, multi-tonal, fluctuating in both frequency and intensity, but constant. I hear it over everything - in the middle of a conversation, I have to actively devote brain power to filtering it out so that I can focus on what someone else is saying to me. When it gets bad, it's one of my worst symptoms - really, catastrophically awful. Major triggers for exacerbation are loud environments, PEM, and - most frequently of all - lack of sleep or poor sleep quality.

I have had tinnitus pretty much my whole life, and it certainly wasn't helped by my time in multiple bands playing loud, aggressive music in my youth, but it was always just a quiet whine until a month or so after my first major ME/CFS crash, when it exploded into what felt like life-destroying intensity literally over night and simply didn't go away for ages. Fortunately, in recent months it has mostly settled back to being just unpleasant and disruptive.

I have spent a lot of time trying to figure out how best to describe the sound to others: recent unsatisfactory attempts include "like curtains of shimmering cicadas undulating in a soft breeze" and "a chorus of leaking tires reverberating within a great metal tank."

I absolutely love @tornandfrayed's "helmet of bees" description.
 
I have spent a lot of time trying to figure out how best to describe the sound to others: recent unsatisfactory attempts include "like curtains of shimmering cicadas undulating in a soft breeze" and "a chorus of leaking tires reverberating within a great metal tank."

I absolutely love @tornandfrayed's "helmet of bees" description.

Thanks, but it's not a patch on your descriptions which are pure poetry.
 
My worse symptom with PEM of course.
It s much worse since my covid in september 2024 and above all after my big crash in march 2025. Since im severe and bedridden it s all day long.
Ive pressure in my ears too and maximal intolerance to Valsalva.
I had brain RMI and scanner in 2025 and everything was ok... so what im suppose to do ?
 
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