Pulsatile Tinnitus/Hyperacusis/Autophony "Attacks"

[bme]

Hi all - my first post here, and hoping for some help regarding what I'm experiencing.

3 years ago I had a particularly bad ear infection in my left ear, and since then I would have diplacusis "flare ups" that would last anywhere from 1 day to 2 weeks. Sometimes it would be 8+ months between the flare ups - usually coinciding with a bad sinus infection. This ear infection also gave me mild hearing loss of the lower frequencies. This hasn't gave me any problems over the last few years as it's been relatively easy to deal with, but I did notice that when going to a cinema the volume of the movie would be too loud for my left ear to tolerate, so I'd have to put a finger in my ear to deal with it.

Fast forward to February 2021, I woke up one morning at 5am to an extremely loud low frequency continual noise in the same ear I have diplacusis flare ups with. The noise was loud enough that I couldn't hear anything else but that, and it sent me in to a panic. After several hours, the noise calmed down but I was left with a "fluttering" noise in the left ear. Next morning, the same happened again - I wake at around 4/5am to this same extremely loud low frequency noise.

Since this happened I get these frequent random "attacks" every few days of the super loud low frequency noise in my ear that appears from nowhere. The attacks typically last anywhere from 1 hour to a whole day, and it can happen at any time - nothing seems to trigger it, but it is debilitating as I have to lay down and put on a loud fan to try and drown out the noise, and wait for it to pass.

I've posted this in the Pulsatile Tinnitus section as when I have these attacks I've noticed that I can hear my heartbeat loudly in my affected ear and I'm hearing sounds in the rhythm of my heartbeat. During these attacks I also become really sensitive to any sound with every noise being really loud and also I can hear myself breathe and hear my own voice loudly. These symptoms only last for the duration of the attacks. The frequency of the attacks are every few days.

In between attacks I hear what sounds like listening into a seashell, which is completely bearable as it's not too noticeable. But I can't put my finger on what on earth I am experiencing with these attacks. It can go from just regular hearing to a full attack in under 60 seconds, like somebody has raised the volume to 200% on this low frequency sound in my ear. I haven't had any balance issues, but have noticed an increase in headaches.

I've seen an ENT and explained the symptoms in full, but they seemed to focus on giving me a hearing aid for my hearing loss caused by a previous ear infection a few years back and didn't really take notice of my explanation regarding the attacks I'm having, almost brushing it off as just tinnitus.

Has anyone else experienced something like this? This is all completely new to me and I am hoping someone can relate to this condition, may have an idea of what it can be, or even have some info on what type of Dr I need to see moving forwards to help find an underlying cause.

Thanks in advance.

 

[Matchbox]

I can relate. However I have no answers for you. It seems errily similar to what I'm going through, including pulsatile high freq T that gets louder for no reason. My seashell sounds are worst in the morning when waking up in bed. The low hum or thumps are hell on earth and stop you in your tracks, the "my voice is too loud" is also not fun.
Could be worth looking into it being otosclerosis or hydrops. I recently experienced a quiet morning but I'm still trying to pin down what I did differently.
Is it bilateral for you too? (only one ear has the high freq pulsing T for me, both have seashells).

 

[SilenceIsBliss]

Hi @bme.

Hopefully your symptoms have come down a bit. What you're describing certainly sounds like Superior Canal Dehiscence Syndrome. I would speak to your ENT for further testing or another ENT if yours brushes you off. If it is SCDS, surgery can work.

Good luck, hopefully you get this fixed.

 

[bme]

Thanks for your replies @Matchbox @SilenceIsBliss

Certainly some options for me to research further in terms of otosclerosis, hydrops & SCDS which you've both mentioned. Seems a lot of these conditions share the same or similar symptoms to each other!

To give a bit of an update since I first posted this topic, around 14 days ago all of my symptoms stopped completely (no attacks, no diplacusis etc). The only thing that remained is very light tinnitus and a very light low rumbling noise - both of which I can barely hear now fortunately, but still in the left ear.

It leaves me in the strange position of not knowing what caused it all, and wondering how can I try prevent it happening again. Having tinnitus is obviously horrible in itself, but after what I went through with my symptoms I would be "happy" if tinnitus is all that I have to live with moving forwards. I'm still due the hearing aids, so maybe that'll help the tinnitus further.

I intend to keep this topic updated if anything changes as it could be beneficial to others.

 

[bme]

Thought I would put another update in here since it's been some time since my last post.

My symptoms returned in June. Less severe than before but still not pleasant to deal with at all.

It's still bad enough that it's stopping me from leaving the house most days as things such as a short 20 min journey in the car is loud enough to trigger an attack.

The difference now is that the attacks aren't quite as loud and neither is the volume of hearing my own voice/breathing when it's happening.

I do have a constant insanely loud heart beat throbbing noise in my ear though which gets louder when I move around.

I've tried to pinpoint what exactly is triggering the attacks and it seems to be a mixture of my heart rate increasing when moving around and also volume related if a vacuum cleaner turns on for instance.

I have diplacusis in the same ear which, interestingly, disappears at the same time as my other symptoms, and reappears when the attacks come back.

Makes me wonder if all this is severe diplacusis caused by some vascular problem, or if it's several different conditions at once.

If anyone can relate to any of the above or have an idea of what I could be experiencing, then I am all ears (or actually just one ear right now).

 

[Greg Sacramento]

@bme, the organ of Corti, or spiral organ, is the receptor organ for hearing and is located in the mammalian cochlea. This highly varied strip of epithelial cells allows for transduction of auditory signals into nerve impulses' action potential. Transduction occurs through vibrations of structures in the inner ear causing displacement of cochlear fluid and movement of hair cells at the organ of Corti to produce electrochemical signals.

Makes me wonder if all this is severe diplacusis caused by some vascular problem, or if it's several different conditions at once.

With any of the three types of diplacusis you can experience what you describe. Most likely no vascular association or as cause unless one had a head injury, which is a very low probability. With moving around cochlear fluid acts as a on switch and nerve impulses time with blood pressure as to hearing a heart beat.