Help Me with My Ear Mystery: Woke Up to Raging Tinnitus, Hyperacusis and Hearing Loss

So 15-ish months ago I had sudden onset severe tinnitus. I went to sleep one night at 11 pm having never experienced tinnitus and woke up at 2 am with raging tinnitus that has not stopped for a moment since. No sickness, no noise exposure, no ototoxic drugs. Just bam.

I was sent to a local hospital where they examined me and did an audiogram. The only significant finding was a notch at 6000 Hz that dropped out to ~55 dB. The rest of my hearing looked pretty normal for a 50-year-old guy with a slope starting above 4000 Hz going to down to >30 dB, both the slope and the notch were bi-lateral and nearly symmetrical. It was assumed by the ENT that the notch must have been preexisting from noise exposure in my youth, though I had no specific event. "Did you ever go to a concert? OK then that must be it. It was noted that 4000 Hz is where you typically see noise trauma. I was sent home with a pocket full of placebos and life went on. When my condition didn't improve after a couple of weeks I was medevaced to a proper first world ENT where I was pumped with anti-virals, steroids, got the MRI, blood work, blah blah blah. The ENT there assumed it must have been viral.

Fast forward 8 months, I had been checking my hearing regularly, maybe biweekly, with a hearing app and headphones and found to my surprise that suddenly my notch had gone away. At about 10 months I got confirmation of this when I got an audiogram at Lenire. When I told my medical history to the Audiologist in Ireland, she said that the hearing loss pattern in both the audiograms from the onset with the notch, and the one she did, did not look like a viral pattern

Flash forward to now, I have been evacuated back to the United States due to COVID-19 and have been seeing ENT's and Audiologists while here. They both say it is very odd. The audiologist said she could tell what caused hearing loss by the pattern. My current hearing looks kind of like just age related mild hearing. The audiograms from my 'event' (I have 4 done in 6 weeks during the onset), she couldn't explain. She said, as did others that it looked like what you see in folks that work in the infantry, or got exposed to an explosion, except that it should happen at 4000 Hz. She explained the physics of this, how the shock wave impacts where the 4000 Hz hairs are, damaging them. I was assured that symmetrical narrow notch damage is not what viral or ototoxic damage looks like.

One other thing to stir into this mix is I work for the US government abroad. I am aware of the Havana Syndrome and other assumed attacks elsewhere in the world. My immediate thought when it happened was that it was a sonic attack. Again I went to sleep 11 pm never having had any tinnitus issue in my life, no sound trauma, no illness, no ototoxic drugs. I woke at 2 am with severe tinnitus, hyperacusis, and a blast shaped notch at 6000 Hz. The other atypical thing is that my notch healed after more than half a year. I had audiograms up to 6 weeks out from onset showing no improvement. I have been told that this isn't how ears work.

So community, tell me, what is the explanation for what happened to me?

 

Nothing obvious, but it does sound like some type of sonic attack. Did anyone you were with suffer any symptoms?

 

No. I was the only one, I was alone in a room sleeping when it occurred.

I just wonder if there are other possible explanations anyone might think of.

 

Is your type of hyperacusis pain or loudness?

 

55db drop is pretty large, have you thought it could be from this?
Sometimes these things do catch up to us eventually..

 

@AfroSnowman Hi, I hope I don't bother you with my question, but I remember you tried Lenire. What do you think of Lenire now? Did it help you? Has your tinnitus improved?

 

That kind of my point, the drop happened for no apparent reason between 11pm and 2 am on April 16,17 2019 and doesn't look conform at all to the expected hearing loss patterns of a viral, ototoxic, or neurologic event. No illness, no exposure to traumatic noise for years if ever.

Undoubtedly the trauma created the tinnitus. The question I have to the community is the source of the trauma.

 

Yes. It helped. In terms of a THI sort of thing before the treatment I was ranging from low end severe to low end moderate score. Post treatment I range from moderate to mild. In short the bad days aren't as bad and the good days I'm pretty much OK. The nature of the tinnitus changed, my swings, both good tend to go on for longer. Before it lasted for days, now it is more typically weeks. I also have far less moving sounds; crickets and crackles used to dominated my days, especially my bad days, now it is a more steady sound. I've also had significant number of objectively quiet days where it is possible to not hear it driving in a jeep with the stereo turned on. This did not used to happen

How much of it was habituation/healing at 12 months in and how much was from the treatment? Probably a little bit of both. I am in a more survivable situation now than I was before, but it didn't do enough to make me whole.

I have come to believe that recovery from this is going to be a process, not an end. I think Lenire is/was part of that process to bring me to a better place.

In terms of recommendation, sure if you can afford it it is worth a shot; you may get some quality of life improvement, but it is not a cure.

 

I have finally been informed that I am officially considered a victim of an attack. Someone purposefully did this to me.

 

Wow, that is awful. Can you share anymore info? I am so sorry this happened to you, but glad you got a diagnosis.

 

Probably best if I don’t. As you can imagine it is a sensitive topic and I don’t want to a accidentally say something that I’m not supposed to.

Actually that has been part of what has made all this even most stressful and emotionally fraught than it would have been anyway.

My journey to this point: First it was absolutely denied, then after a lot of fighting and enlisting the aid of private medical professionals it was accepted as a possibility to the point that I was put in a study for people that have been potentially impacted, then I was left with an uncertain status, and now finally this week I have been directly and publicly told by my organization that it happened to me.

Beyond that just trying to process what it means that this horrible thing happened because of someone’s choice and that I can start to publicly talk about what happened to me (in a careful way for now).

Anyway it has been a hell of an emotional week for me and my family.

 

Yes to the hyperacusis early on but that has diminished to a no big deal status now.

 

If it was a noise attack, how did you not wake up?

 

I've been reading up on it since you posted and my heart goes out to you and the others.

 

It is probably not appropriate to discuss the details of my case beyond what I have for a variety of reasons. But if you do a search on Havana Syndrome there is a lot in the press about it right now Sadly I read about more cases in Columbia just last week.

• Wikipedia: Havana Syndrome
• Havana syndrome: Berlin police probe cases at US embassy
• US officials reported Havana syndrome symptoms in Colombia
• The new theory for bizarre neurological illness impacting US diplomats

 

If this is Havana Syndrome-adjacent (and that seems likely given what the OP has stated) the method of attack is not agreed upon at this time. It may not be as simple as a noise attack.

 

Thank you so much. That really means something to me.

 

I experienced something similar in the sense that I did not hear a 16 kHz tone, but it damaged my ears.

In OP's case, it could have been a high frequency sound, or a targeted EM wave attack, possibly in the RF or MF range, from what I know. Or something chemical.

This is scary stuff. My condolences @AfroSnowman. I hope you will find peace and relief.

 

Good point. I assume loud noise even outside the human hearing threshold can damage ears. Like 60 kHz @ 140 dB.

 

@Brian P, @Tau, @Taqq, again it is kind of tricky for me to talk about, but it is widely reported that it is a mystery about the source. Many news articles conjecture about microwave weapons being used, but fundamentally and concerningly we have yet to figure out the source. I think it is safe to assume it is not a loud noise as such that causes the damage. A lot of people have pretty profound neurological and vestibular issues after the attacks. Somewhat fortunately for me my issues appears to be limited to my audiological system.

A pretty good explanation of where we are on currently understanding this is in this interview transcript from just 2 days ago.

New cases of 'Havana Syndrome' grow as cause remains a mystery

 

Well hooray for me I guess. So tired of talking to the alphabet soup of agencies. I’d love for them to get the pound of flesh out of whoever did this to me but each time they come out with a new report it doesn’t make my symptoms one iota better.

External energy source may explain ‘Havana syndrome,’ panel finds, renewing questions about possible foreign attack

 

Oops. I was just about to alert you to that very article

 

Yeah a consortium of experts come up with more non-answers.

 

Didn’t the CIA just release a statement recently, saying that there is no evidence linking Havana Syndrome to a foreign country? Well doesn’t really matter, since I’m not type to believe everything they tell us.

 

@AfroSnowman, I am following this with interest. The story appeared on the BBC also today.

It is really shitty - I am sorry. But the CIA must be looking into this in more detail.

Have you spoken to others who have been affected in the same way? It is a shame that someone cannot find out more about what is actually known about this.

What I was wondering was: if something has been developed by a hostile party that has such an effect on people, surely there must be a known way of reversing the symptoms. And I wonder whether that method could be applied to tinnitus caused by other means.

 

I don't think there is any reversal. If I lost IHC or OHC or got other other parts of my neurology scrambled by exposure to an unknown energy source or a designed toxin, I would assume it is as much of a one way street as if I had gotten it from a rock concert or an ototoxic drug.

 

Well that's interesting. The CIA leaked a preliminary report finding no evidence of it being caused in a campaign by a single state actor. There is still debate whether this finding is valid, or why it was leaked.

Put all that aside, what else could have happened to me? What causes instant bilateral symmetrical hearing loss notch at 6 kHz without exposure to a blast event (look at original post for details)?

Regardless of whatever official findings CIA, State, DNI eventually settle on, no one, not the researchers at the NIH, not the ENTs and audiologists I have seen, not anyone on Tinnitus Talk has ever given me an explanation for how this could happen... thus given my line of work and posting abroad, the suspicion of an AHI (Havana Syndrome).

 

I’ve read a few theories, but as always the issue is there’s no hard evidence that can pinpoint the real cause behind the unexplained cases. The one theory (I believe it’s mention in the article you posted) that I found to be the most plausible IMO, that AHI is link to surveillance devices. There is new surveillance tech that no one's seen yet, and the "syndrome" is an unintended side effect of its use, having some weird effect on certain people that whoever's using it hasn't pinned down yet.

If we go by this theory, that may be why you’re having difficulty finding a proper explanation on what happen to your hearing. I will say however, I do recall reading early last year, that some people reported hearing a loud noise before their sudden onset of symptoms.

Without evidence, this is all conjecture. Your guess is probably better than anyone. I’m going to assume you are one of the people that belong in that small group of unexplained cases. I hope you’ll get some closure at some point.

 

How are you doing now?

 

Same. Sigh.