Hyperacusis and Tinnitus from Toxin Exposure and Maybe Benzos?

Hi all,

I've been suffering from hyperacusis for almost 2 months now, and recently developed tinnitus.

My story is very confusing and I would love to get some insight.

Early June, I had exposure to a toxic aerosol, which carries the risk of CNS/PNS and auditory organ damage. My problems were just breathing at first, though my inner ears had a slight burning sensation, along with things sounding lower pitched. I was so preoccupied with the breathing issue that I didn't acknowledge the hearing issue much until it was too late. About 2-3 weeks after the incident I did notice that people with loud voices seemed a bit more annoying, but I didn't notice it developing into anything worse until the end of the month/beginning of July.

Since mid-June I've had trouble sleeping. I had to find a psychiatrist quickly, and they gave me Hydroxizine and Klonopin to sleep better. It worked wonders... except now I have been off the Klonopin for a few days, my hyperacusis is at its absolute worst. I also began developing tinnitus as of 7/21. I can't tell if it was from further hearing damage or from the meds. I'm seeing so many horror stories now about benzos and hyperacusis and tinnitus. For reference, I had been taking 0.5 mg twice a day for about a month.

I've been bouncing around doctors, and so far not many have taken me seriously about this and dismiss it as purely psychological. Most appointments I bring my toxicology safety sheet of the chemical and it's completely ignored.

I've been to two audiologists so far. The first claimed that H due to toxin exposure had a better recovery chance than acoustic injury, felt I'd bounce back by August (lol), and wouldn't give me any sort of TRT until I got some sort of brain scan to prove damage (the neurologist I saw after did not believe in my condition and refused to treat me). Second disputed the first's claim, was willing to start TRT with me after insurance got sorted, but also gave the usual "don't overprotect, desensitize" advice and to not read stuff on the internet. Oddly enough, didn't give me any sort of LDL test, just a basic hearing test, in which I tested normal. Also said that my hearing most likely wasn't damaged and won't get worse... and yet it has. I'm a bit skeptical, but I want to try TRT because I'm desperate.

These last few weeks I've been trying to get outside to "expose". I still drive. I keep my Bose noise cancelling headphones on me at all times in case I run into any motorcycles or planes just to be safe. I try to stay in hotels when I can. But now I'm suspecting that every bit of sound has been damaging me this whole time. The onset was over the course of a few weeks vs a few days that I see normally for those with acoustic injuries, so naturally I kept listening to music, feeling fine, etc. I also felt like I was "cured" for a few days and got too cocky, and ended up doing loud, music-related activities for 2 hours. Was back to being sensitive within days after.

My tinnitus is more prominent in my left ear, mostly a light droning noise in the presence of other noises, along with a more mild cicada-like sound.

My hyperacusis does cause ear fullness and burning at times but more than anything it gives me a "shock" feeling in the left side of my brain. I've had left side of body tingling, predominantly in my head, a week since my incident. I don't really have the "stabbing pain in ear" most folks seem to have. My tolerances to certain sounds has decreased over the weeks and today it's the worst it's ever been. I can't tell if it's from benzo withdrawal.

I'm very new to all this, any sort of insight is appreciated. I'm sorry for the info-dump, but I don't see many stories like mine, and I don't even know if TRT will help. I'm still fairly young and I feel like my life is practically over.

 

Really sorry to hear about your story.

Your case does sound very unique and what intrigues me is this left side tingling you’re describing. Have you noticed any kind of droopiness/paralysis on the left side of your face or perhaps some recent asymmetry between the two sides?

 

Thank you.

Nope. I can smile and no drooping. But in terms of feeling and temperature detection, left is very much different from the right.

When this first happened and I went to the ER, I was told that left side of body neuropathy or whatever you wanna call it indicates some sort of brain stem issue. Since the neurologist I saw was so dismissive, I have no idea if this could be a possibility, or if I would need to have other issues on top of what I already have for it to be legitimate.

 

It sounds like you are fairly new. Here are my thoughts:

1) Fears of overprotection are over hyped. The reason for this is that most doctors fraudulently believe that moderate noises (that would not damage a healthy person) cannot worsen someone with pre-existing hyperacusis. This is not true. Everyone who has hyperacusis knows this. I once experienced a huge and obvious setback from listening to music at 45 dB for a few hours. It was obvious. I am still dealing with this incident and have new tones from it.

Over protection is just a way for the literature to create a victim blaming culture. No one wants to over protect. Hence, why you had your set back from "getting cocky." This is normal. Under protection is normal and really should be the emphasis on what to look for.

2) True hyperacusis is so rare that it's unlikely you are going to find a story that sounds just like yours. It's tough stuff, as I haven't found a single story that resembles mine. I totally understand why how frustrating it is to not have any answers.

3) Do not use headphones unless you have irrefutable evidence that it doesn't worsen you. I made this mistake. This also falls into the victim-blaming mentality.

You will find, perhaps to the point where you will become numb to it, that hyperacusis has a culture of victim blaming. The originator of TRT, Jastreboff, is a professional victim blamer. You just have to watch some YouTube videos to see that.

I have never seen an ENT know more about hyperacusis than a regular on Tinnitus Talk. That's not to say you should ignore your doctor, especially if they raise serious medical concerns, but there's a lot of dogma on this condition. I believe ENTs victim blame because they can't break it to the patient that they can't fix them.

The most important thing is to listen to your body. Just because I had a setback from 45 dB doesn't mean you will. I believe hyperacusis patients should always be trying to understand their own bodies. There are no simple rules on what over protection is. But most ENTs lean on the side of "that's impossible," when the patient knows full well what happened.

 

How are you doing today? I know it's been a few weeks since you posted. I've been there.

 

Up and down. My hyperacusis got much worse mid August. I've been trying to recover. I gained 2 nasty tinnitus tones a few weeks ago that I still have. My tinnitus is still extremely minor.

I've given up on doctors or trying to find out more information on my particular case. It seems ototoxicity outside of medication is not paid much attention to, and I can't find anyone with a similar case to mine.

I still only have loudness hyperacusis but I'm very fearful that it won't be for much longer.

 

My hyperacusis was most likely caused by exposure to a Category 1 risk ototoxic chemical. I've been dealing with the fall out from it for months now, including a few strange neurological symptoms.

My hyperacusis is mild to moderate and it's still primarily loudness (for now). I will get sensations in my ears but mostly will get weird "shocks" concentrated in the left side of my skull from noise or certain stimuli.

Some early signs of my hyperacusis post-incident, I heard things slightly louder, and had weird traveling burning sensations in my ears. Higher pitched sounds or songs sounded lower pitched and slightly distorted (this went away). At the time I assumed this was me losing the ability to hear higher frequencies or something. From the MSDS, and these symptoms, I was confident that my cochlea was damaged.

But now I'm beginning to wonder if I may be a mix of causes, and that any neurological damage I may have may be influencing my hyperacusis. The weird nerve sensations in the left side, "exploding head" symptoms whenever I try to fall asleep, sensitivity to flashing bright colors, more prone to motion sickness and migraines. From what I can see, people who get hyperacusis through neurological or jaw-related causes outside of cochlear damage have a much harder case. I'm also reading about brain stem inflammation being a cause of hyperacusis, don't even know where to start with that.

Do my symptoms fall in line with anyone else's? Are there any explanations or speculations on what I may be going through? And do you think it may be cochlear, or a mix of both? I realize it's a lot to ask a forum since a lot is speculation for such an untapped medical area. But I can't begin to unravel the science or explanations behind any of what I may be going through, especially since my case does not fall into the typical "noise injury" category, and I started with hyperacusis, not tinnitus. If I don't have any cochlear damage, or it's only half of the equation, I feel my goose is cooked.

In sum, I'm terrified that I'm going to be waiting years for FX-322 or something else, only to be disappointed.

 

Hi @Shizune. I believe my issues to have been triggered by noise but I’m not sure if something weekend my system to make me more susceptible. I lived in an apartment that had an issue with mold for a few years, and I had a horrible cold a couple of weeks pre-hyperacusis/tinnitus.

I share many symptoms as you. Besides the obvious hyperacusis/tinnitus ones, I also struggle with a lot of neurological stuff. Exploding head syndrome, myoclonic jerks, pins and needles through my body (abdomen, legs, arms and lower back heavily affected).

I have visual show syndrome and extreme sensitivity to light. Frequent migraines and almost daily nausea. I often feel like my head is in a vice but I can’t tell if it’s a migraine or some sort of occipital neuralgia but my scalp is extremely painful to the touch in one specific spot.

Sometimes I’ll get this blob in my vision that occupies about 30% of it. It’s not a floater but a solid, fluorescent greenish blob. My body has a hard time adjusting to temperatures and I think some sensitization is at play.

For example today I hit my hand on something and it was painful and caused a welt, but not more pain than stubbing your toe. A few moments later I clearly felt my body go into fight or flight mode. I got that feeling you get after a jog, my face burning intensified, and my hands and feet get really clammy and I got super panicky.

I’m home bound so I don’t take any meds at the moment but have experimented with supplements and so far no luck. I also worry that FX-322 won’t work for me and that there’s a larger issue at hand. That being said I think getting rid of the tinnitus would be a huge relief and would make the other symptoms easier to deal with.

 

Do you still use your noise cancelling headphones? Have you ever had a spike after using them?

Thank you!

 

Hey aura. No I stopped using them pretty quickly and haven't touched them since August or September 2020. When taking the no protection advice from the audiologist, I just used earbuds with pink nose and sound cancellation noise when going outside. So I was putting more sound into my ears on top of the outside noise exposure as well. I didn't really know what the concept of actual ear protection was at the time.

I tried to do pink noise therapy for a few days using them way back then, and though it was relaxing at the time, I just came out of it feeling much more sensitive to noise. I think using them made me develop tinnitus, because it came on pretty quickly. On top of the sound, it had a very loud and obnoxious low battery beep that would come on. So I feel like at my severity level right now I'd most likely get a spike from attempting to use them again.

 

So you used them for noise cancelling AND pink noise?

 

Yes, so the earbuds had a noise cancelling setting, which just is basic white noise that drowns out sounds around you. And then I had downloaded a pink noise mp3 to my phone and would play it to listen through them. I'd use them separately. They were Bose Quiet Control Wireless Headphones.

So, for someone with, say, misophonia or something, they may be useful for blocking out noise. But for those with broken ears through hyperacusis and tinnitus, probably not the best idea since earbuds and headphones aren't good to use anyway. Plus, no actual protection is happening. Though I know some who can safely use noise cancellation settings without much trouble. I am not one of those people.

 

I don't think we're talking about the same thing.

I am not talking about noise masking using white noise but noise cancelling.

"The technology, known as active noise-cancellation (ANC), works by using microphones to pick up low-frequency noise and neutralise it before it reaches the ear. The headset generates a sound that's phase-inverted by 180 degrees to the unwanted noise, resulting in the two sounds cancelling each other out."

 

Yes that's what I meant. I just used white noise as a layman's term, wasn't sure what else to describe it as since that's what it sounded like. Sorry, I don't know much about this stuff.

Either way, I still got worse. I used the noise cancellation setting for going outside and being around loud noises. And then the pink noise recording when I attempted sound therapy on my own.

 

So with the noise cancelling mode on you only hear a very soft hiss and this only in a quiet room. Is this what you were hearing?

My headphones also have a "masking" feature, a weird white/pink/rainbow noise that I've never used because I found it to be very annoying.

 

Yes pretty much this. A soft hissing sound blocking outside noise out.
I guess they can actually protect your ears from noise because of the literal cancellation, but not from loud impact sound. But of course in the case of broken hyperacusis/tinnitus ears, they probably don't do much since anything could act as loud impact sound. So that's probably where my worsening came from, not the actual hissing from the cancellation itself. Then again, who knows with these things.

Do you find the masking feature just annoying or do you find it to spike your condition/feel more sensitive after?

 

I wanted to make a separate update post about my general situation:

In July 2022 I decided to bite the bullet and take the audiologist's advice of easing off hearing protection. I wasn't getting better, and only getting worse. So I had little to lose. Still wary of the black and white "no protection ever" laws, I tried to take things slowly like a lot of people do here with loudness hyperacusis.

It worked, sort of. I stopped wearing hearing protection 24/7 and saw improvements. I also was taking the supplements GABA and L-Tryptophan at the time, which I already saw improving me before I began the easing of hearing protection. After taking hearing protection out of the equation, I saw a rapid improvement, going from only being able to tolerate 8 on my speakers to 18. I was also microdosing Psilocybin every weekend and trying to do visual relaxation.

Well that all came to a halt end of July-early August. I think I overdid it with the supplements. I attempted a Stamets Stack, while also taking my other supplements. Something felt off, and within a few days I had a major setback and turned my speakers back down. Even so, I was only wearing hearing protection to bed or if I left the house. I stopped being able to tolerate GABA and L-Tryptophan sadly and each time I try to take it, I feel more sensitive and have big sleep disturbances, when prior to that they'd give me great sleep.

I stayed about the same until October 2022 when I was put on Topamax/Topiramate, a migraine and anticonvulsant drug. I saw more improvements in my hyperacusis and was able to speak again without limits or setbacks. My TTTS went away entirely. Unfortunately, the med gave me very severe mental health issues and brain fog so I did not get to be on a high enough dose to see continued improvements. I want to note that I experienced some of the most extreme anxiety and paranoia while on Topamax, but this did not make my hyperacusis worse.

During this time I tried to microdose Psilocybin again, since I read it shouldn't affect Topamax. I felt more sensitive each time and stopped.

Although I felt better, I was not 100% immune to setbacks and saw very drastic worsenings each time I attempted to take a shower, and only was able to bounce back if I increased the med dosage. When I got off the meds, I noticed my tinnitus increase a tad, but the hyperacusis improvement didn't go away entirely. I could eat crunchier foods again, for one.

I also cut dairy out of my diet at this point, it may have contributed to some improvement, because my neurologist suggested going on a migraine diet to see if things got better. Tough for me, but I thought dairy would be the easiest to replace.

My audiologist got me molded for custom earplugs. They went in deeper than my last ones that caused horrible occlusion. Still though, I dislike these kinds of earplugs because I find it amplifies internal noise too much, and I would still wake up constantly if I wore them to bed.

The last few months:

I take Hydroxyzine for when I can't sleep. I might have noted before, but on days of intense noise exposure I experience major insomnia. So I use Hydroxyzine as needed. Sometimes I get too desperate and would take it after taking a Melatonin to no avail. Which is stupid on my part because too many sleep meds is partly how I got into this mess to begin with, but I get too panicked when I'm unable to sleep, since that can also make things worse for me. During this setback I felt some pain, but it went away.

At some point I was experiencing more sensitivity from Hydroxyzine, I reckon my body stopped tolerating that too. So I stopped that, only took Melatonin as needed, and also reintroduced Magnesium into my regimen, along with fish oil. Magnesium allows me to sleep naturally.

I also tried to smoke CBD weed for anxiety at one point. I got the night time ear drum spasms from it, probably because of the smoke. So I tried to eat the weed raw instead to see if that'd provide any benefits. I was a bit wary of it and felt I shouldn't mess with it, so I stopped that.

I've been trying to enjoy life more and go outside. I went into a store and a mall the last few weeks with hearing protection. I try not to push if I feel uncomfortable. I surprisingly felt ok most of the time. My limits are still around 50-60 dB. I talk quietly every day. I listen to music every day, on 12 volume on my speakers (I've been stuck on this volume since my setback in July and haven't been able to get back up to 20).

My audiologist told me that the more sound I take in, the more I'll be able to increase the volume and see more tolerance. So far, I didn't really see much of that. Maybe my ceiling for improvement was so low due to my early on mistakes. I wasn't able to bounce back to where I was in July, but maybe I'm just impatient. I also didn't attempt the sound generators again, since early on they irritated me. I can't tolerate white or pink noise at all, but tried to use green and brown noise here and there.

I still tried to at least partially believe the whole mantra of 'make noise positive' and 'retraining my brain' because my case had a better shot at that being true, and I do believe that central gain was a factor with me.

Other things:

- My tinnitus has increased a bit these past few months too, I assume because I was exposing myself to sound more often. I'm still mild though.

- Recently, a doctor also prescribed me Trazodone for sleep just in case. I took that twice and felt a bit more sensitive each time, so I stopped those. I don't know if it is the cause of how I feel today but without further ado...

- Added fish oil to my regimen along with the Magnesium. Current supplement stack: Vitamin B2, B12, vitamin D3, probiotic.

- Doing daily Qigong and practicing deep breathing.

- Lifting small weights (just 10lbs) daily. Overheads, deadlifts, rows.

- Drinking tons of tea.

Today:

I'm making this post now because I want to report I'm much worse off now lately and this time it isn't letting up. I showered once a week the last 2 weeks and saw sensitivity each time, even with earplugs. I still tried to expose, enjoy life, do what I had been doing, because my setbacks weren't as frequent.

I'm experiencing a lot more frequent noxacusis, though it's still mild and feels more middle ear related aching than stabbing inner ear pain. What's worrying though is that this time I'm experiencing more frequent ear fullness and jaw problems. I also can't talk as much without getting the fatigued feeling in my throat and ears. My ear drum spasms at my own voice again. Before that most of my loudness hyperacusis problems manifested in sleep disturbances, brain zaps, nerve jumps in my scalp, TTTS, but not perpetual fullness.

What's the cause? Who knows. Getting too cocky and overexposing maybe? Bad luck? It's very different this time than my usual setbacks. I also am just extremely sensitive to any meds and have that pattern of tolerating supplements for a time but then things reversing. So it's anyone's guess.

Not looking forward to what's in store now. I can't predict what these new symptoms mean and if they're here to stay.

I have no lessons to give from this update. I know the over/under protection debate is a firey one but I do attribute easing off improving me, and I wasn't experiencing setbacks as easily and could actually speak again. ***Keep in mind though I'm mainly a loudness hyperacusis case, I'm not advising this for noxacusis cases.*** I'm torn on how to proceed with this because I'm very much an overprotection causing harm case, but I don't want to bombard my ears with more sound if I feel like crap and am developing nox with actual ear damage.

Well, here's some: Careful with the supplements, especially sleep meds even if you're desperate, if you're a case of mild brain trauma like I am. Also, I guess be careful with showering no matter how smelly you might get. Those seem to be what killed me each time.