Extreme Hyperacusis and Tinnitus — Noises Trigger Dizziness and Panic

[Wrfortiscue]

Try not to worry about what you did in past. Wipe the slate clean and return to basics. Start using a sound machine for low-level sound enrichment. When you are comfortable with this, slowly introduce the white noise generators.

I would if I could. Digital noises and continuous sound ramp up my tinnitus. I spike to any decibel I can hear that's digital or continuous (A/C, PC fans, idling etc). I think my hyperacusis worsened, that's why. Going to have to start from square one yet again

 

[David S]

Digital noises and continuous sound ramp up my tinnitus. I spike to any decibel I can hear that's digital or continuous (A/C, PC fans, idling etc). I think my hyperacusis worsened, that's why.

I agree. Digital noise is by far the worst. I hate those speakerphones that we have in the conference room. I try to stick to natural sounds.

 

[Michael Leigh]

I agree. Digital noise is by far the worst. I hate those speakerphones that we have in the conference room. I try to stick to natural sounds.

Give it time David. You are making progress. Digital noise will no longer irritate you as your ears will be healed.

 

[Wrfortiscue]

I agree. Digital noise is by far the worst. I hate those speakerphones that we have in the conference room. I try to stick to natural sounds.

You listen to natural sound as in being outside or opening the window I assume?

 

[David S]

You listen to natural sound as in being outside or opening the window I assume?

Being outside. Family chatting. TV on low volume seems to be ok as well.

 

[Wrfortiscue]

Being outside. Family chatting. TV on low volume seems to be ok as well.

Thanks. I still react heavily to TV though.

 

[Audigo]

Update: Tinnitus is a strange thing.

Last night I walked a few kilometres through the snow (oh God did that feel good. No traffic noise in the night, the snow also absorbs a lot of sound). I did it with earplugs, removed one for a few minutes in my good ear.

Then, on the way back home, something exciting happened. From one second to the next, four of my five (I don't know exactly how many tones I have, but I think it's five) tinnitus tones suddenly stopped and only one very steady tone remained in my left ear (my bad ear). I couldn't believe it at first and checked to see if I had suffered sudden hearing loss.

But that was not the case. Over the course of about a minute or two, the other sounds gradually returned, but much quieter than before. And then, two minutes later: abrupt silence again. All the sounds disappeared again, except for the one steady sound in the left ear. In the course of 5 minutes, the other sounds came back again, but also quieter than normal.

I then went straight to bed and fell asleep peacefully.

Since this morning, the hyperacusis in my right ear feels 10% better. It's still severe, and I literally can do nothing without earplugs in my house, but I managed to listen to music for five minutes for the first time in almost a month this morning and burst into tears. What a great feeling. I never thought I would feel such gratitude for being able to listen to Freddy Mercury's voice for five minutes.

Don't get me wrong. The tinnitus is back, with all its sounds, but still a little quieter than it has been for the whole of the last month.

Something is changing, which is great.

I have no idea what it could be. Only my attitude and my mindset have improved a lot in the days before. Maybe it has something to do with that. Anyway, my tinnitus developed during a very stressful and anxious time.

Stay strong.

 

[Nick47]

Well, if you're not getting pain, that's a damn good sign. Loudness hyperacusis can be distressing but I promise you will be ok. There's only a couple cases of loudness hyperacusis who I know who are completely debilitated. I have severe pain hyperacusis so it's much different. My pain hyperacusis needs silence for me to feel bette. The more sound there is around, the more deep, stabbing, burning, aching pain I get. Before my pain hyperacusis got really bad, my loudness hyperacusis was so severe I couldn't touch a bad or flick a light switch, they sounded like explosions. I hate to admit it but sound therapy helped my loudness hyperacusis a lot. I hate anything inside my ears; it spikes my tinnitus every time. I used a fan next to me 24/7 and I improved a lot in certain frequencies. I overdid it and made my pain hyperacusis worse.

My opinion: I would take it easy and just wait and see if your loudness hyperacusis goes away first. If it doesn't improve in 6 months to a year, I would try low-level sound and see if it helps. I do recommend to try and relax because overthinking it will definitely make it worse. The only time I would start to worry is if you start getting actual lingering nerve pain. I sound like a hypocrite for this but if you only have loudness hyperacusis, I do not recommend to sit at home and never go outdoors like some of us. The only reason I do stay home is because one noise will leave me in severe pain for days and permanently worsen me.

I think you have a very good chance at healing. You need to exercise, eat healthy, and distract yourself as much as you can.

Even when my loudness hyperacusis was really bad, I still went for walks at night, had a few friends come over, did things outside, and exercised. It's when I started getting nasty nerve pain I realized it was serious and I needed to stay home or I would continue to worsen.

What turned my loudness hyperacusis into severe pain hyperacusis (noxacusis) was more noise damage, airbag deployment, then a brake screech gave me the deep lingering stabbing pain in my left ear.

Wear earplugs in environments you cannot control.

If you're getting dizzy from sound, I would get more tests done, it could definitely be some vestibular issue. Something else could be going on here.

Have you tried a low dose combo to ease things up temporarily? Things that are used in pain. Maybe some sort of combo of a tricyclic antidepressant + LDN + Gabapentin + low dose Paracetamol.

Maybe on their own they do little and you've methodically gone through each one, however, a combination approach for a couple of months might be worth it to see if you can get a bit more function in your life.

 

[Brian Newman]

Have you tried a low dose combo to ease things up temporarily? Things that are used in pain. Maybe some sort of combo of a tricyclic antidepressant + LDN + Gabapentin + low dose Paracetamol.

Maybe on their own they do little and you've methodically gone through each one, however, a combination approach for a couple of months might be worth it to see if you can get a bit more function in your life.

Thanks. Yeah, I've been on LDN for 7 months now and it does take the edge off but isn't enough for me to get out of silence. I'm also on lots of CBD that helps the depression a lot and takes a little pain away. Antidepressants really worry me because they seem to help people or really screw them up. I can't imagine my tinnitus getting even worse. I got a bunch of Lyrica on my dresser that I'll probably end up trying, seems like it's worth a try. Gabapentin could be a good one too; I'll probably try that next. And then maybe Cymbalta.

LDN is pretty easygoing, it gave me nasty spikes in the beginning, but now I have no issues at all.

I've been weighing my options for a while, I just have to make the right decision because one wrong move will screw me up even worse. Honestly, even though I probably can't use the Dr. Shore device, it would be nice to have a safety net in case all hell breaks loose from all the drugs I'll be trying.

 

[Nick47]

Thanks. Yeah, I've been on LDN for 7 months now and it does take the edge off but isn't enough for me to get out of silence. I'm also on lots of CBD that helps the depression a lot and takes a little pain away. Antidepressants really worry me because they seem to help people or really screw them up. I can't imagine my tinnitus getting even worse. I got a bunch of Lyrica on my dresser that I'll probably end up trying, seems like it's worth a try. Gabapentin could be a good one too; I'll probably try that next. And then maybe Cymbalta.

LDN is pretty easygoing, it gave me nasty spikes in the beginning, but now I have no issues at all.

I've been weighing my options for a while, I just have to make the right decision because one wrong move will screw me up even worse. Honestly, even though I probably can't use the Dr. Shore device, it would be nice to have a safety net in case all hell breaks loose from all the drugs I'll be trying.

You can keep them all at a low dose. I don't know if something like Deanxit (a very low dose of a tricyclic + antipsychotic) may help when added to the cocktail. Maybe build your own low-dose cocktail.

What dose of LDN are you on?

 

[Juan]

My question: even though you can find some success stories here regarding hyperacusis, is it rather unlikely that it will disappear again, or does it get better after some time for most people? I have not been able to find any really reliable figures on this so far.

Because the evolution of hyperacusis is very individual. It depends on what triggered it, sound exposure, lifestyle, the job you do, etc.

In general, I would say hyperacusis caused by noise trauma is the hardest to tackle. There's no treatment for hyperacusis. But there's stuff you can do to try to go on and live with this condition, like a healthy diet, exercise, avoiding loud noise, but at the same time trying to have comfortable levels of sound around you. it's a fine balance.

Depending on how severe your hyperacusis is, you can get setbacks from exposure to too much sound. Some of them are temporary setbacks and some of them are permanent setbacks, meaning they will make the condition worse or deteriorate your hearing in some other way. The bad side of this is that you cannot really tell if a setback is going to be temporary or permanent in advance. You cannot anticipate all sound exposures at all places either, and that's why setback happens. So it's a bit of a Catch-22 situation.

 

[Brian Newman]

What dose of LDN are you on?

I'm on 5 mg. Had to slowly work up.

 

[Audigo]

Another update:

Guys, I don't know what to say...

It happened again last night. Within a second, all the tinnitus sounds had disappeared from the face of the earth, then reappeared over the next few minutes. Again quieter than before.

This morning I was able to watch a whole hour of TV, at a very low volume, with a plug in my left ear. I can't see the light at the end of the tunnel yet, but I can feel a slight breeze. I'm dizzy to no end, and I feel more than limp, but it's still nice to see something happening. Tomorrow I have an appointment at a lab to be tested again for Lyme disease and possibly other things.

And for the people who are now thinking: it's mild hyperacusis, it will just disappear again quickly: no. I had mild hyperacusis in December and January. What I've had since February is just horrible. 99% homebound and doing 90% of the stuff in house with double protection, the last 10% with plugs.

I can't imagine how it could be more pronounced, except through pain. But I never had pain. Just dizziness, panic and a feeling like being electrified.

I pray every day for relief for anyone struggling with this incredibly limiting condition.

Stay strong.

 

[Audigo]

Update and Question:

Hello everyone, a lot has happened since I last posted here.

In the weeks and months leading up to the beginning of May, my ears improved dramatically. Day by day I was able to tolerate more and especially louder noises until I finally felt totally normal again. Loud music was no longer a problem, nor was driving. I could sit in a restaurant with the whole family without any problems. The tinnitus also became incredibly quieter. From multiple incredibly loud tinnitus sounds, it finally became one single sound that I actually only perceived in absolute silence.

So I had my life back and no longer needed hearing protection in everyday life for several weeks.

Until a week ago: I was sitting in a restaurant with an old friend and we were talking. The volume was absolutely no problem, everything was as it was in my old life before hyperacusis.

Until he told me about an extremely traumatic event that happened to him recently. Within a few seconds I noticed how the muscles around my ears contracted and cramped. In addition, it felt like blood was shooting through my ears and the sides of my face. All at the exact moment he was telling about this traumatic experience and my brain was processing this information.

For a week now, the muscles under my ear have been extremely tense, everything feels cramped and incredibly uncomfortable. My sensitivity to sound has been significantly worse again since then. The tinnitus is also louder again at times.

There seems to be a direct connection between my ears and the emotional processing in my brain. Volume did not cause any setbacks before.

Has anyone had similar experiences? The muscles tense up more and more each day.

Can I do something against this, to get rid of the tension?

I have no pain so far. It's just incredibly uncomfortable.

Stay strong.

 

[Hardwell]

There seems to be a direct connection between my ears and the emotional processing in my brain. Volume did not cause any setbacks before.

Has anyone had similar experiences? The muscles tense up more and more each day.

It would certainly make sense, I feel the muscles in my face tense up when I'm anxious. I'm not sure if there's a direct connection for me in terms of tinnitus.

I have read through your post and relate somewhat to other things you have said. I'm currently 'spiking' and have hyperacusis with now 5 tones or so. But sometimes when I'm outside, which is rare at present, those 5 tones can just morph into a singular tone.

I was wondering if you had experienced your tinnitus getting louder due to being exposed to external noise at times?

 

[Juan]

Has anyone had similar experiences? The muscles tense up more and more each day.

Can I do something against this, to get rid of the tension?

The shoulder, neck, jaw muscles... they all have some impact in our hearing. They are all connected. However, in my case those muscles may tense up due to noise, and irrespective of my psychological reaction to noise. Even if I am calm, after unexpected loud noise happens, my ears get pressure and my muscles may contract, get tense, etc. It's a physical reaction to loud noise.

To me it sounds strange that you had a relapse due to a comment or a conversation with a friend. It sounds a bit like a psychological problem...

There is also ear fatigue. Ears that get tired after repeated exposure to noise, even levels that may be considered normal (loud but not too loud, not like 85 dB or higher). But you said your ears reacted normally to everyday activities for a few months, so I would rule out ear fatigue.

As for the tension, cramps... go to a physiotherapist. It works wonders!

 

[Audigo]

To me it sounds strange that you had a relapse due to a comment or a conversation with a friend. It sounds a bit like a psychological problem...

Yeah, it's definitely a psychological thing. My hyperacusis started at a very stressful time with lots of anxiety. Maybe it's "just" a muscle thing caused by stress and anxiety. I don't know. I have an appointment with a TMJ guy today.

 

[Audigo]

I was wondering if you had experienced your tinnitus getting louder due to being exposed to external noise at times?

Yes, definitely. When my hyperacusis got better and I started showering and using the hair dryer again, the tinnitus always spiked for a few minutes after that.

That reactivity got way better, too.

 

[Juan]

Yeah, it's definitely a psychological thing. My hyperacusis started at a very stressful time with lots of anxiety. Maybe it's "just" a muscle thing caused by stress and anxiety. I don't know. I have an appointment with a TMJ guy today.

I suggest physiotherapy on shoulders, neck and back too, as there are trigger points, and also some muscles are ultimately connected and can have an impact on ears. You may find that when the physiotherapist presses on your shoulder or upper back, you feel relief in your ears.

 

[DesertRain]

Hey @Audigo, how are you doing now?

 

[Audigo]

Hey @Audigo, how are you doing now?

I'm in a MUCH better place right now. My right ear feels completely normal on some days. On bad days it still has LDLs around 90-100 dB.

My left ear is a little worse, hard to say, but I think the biggest problem here is TTTS. The muscles in my ear are responding to nearly everything. So the left ear is still sensitive but it's more a frequency-based muscle contraction than a loudness issue.

My tinnitus has died down extremely. I had so many different and super loud tones and now it's like a super quiet and ultra high-pitched "eeee". A little louder in my left ear. On good days I can't hear it in most daily situations.

I still do carry hearing protection with me everytime I go outside but most of the time I don't need it, or just put it in to feel safe, or to avoid unpredictable loud noise.

 

[DesertRain]

I'm in a MUCH better place right now. My right ear feels completely normal on some days. On bad days it still has LDLs around 90-100 dB.

My left ear is a little worse, hard to say, but I think the biggest problem here is TTTS. The muscles in my ear are responding to nearly everything. So the left ear is still sensitive but it's more a frequency-based muscle contraction than a loudness issue.

My tinnitus has died down extremely. I had so many different and super loud tones and now it's like a super quiet and ultra high-pitched "eeee". A little louder in my left ear. On good days I can't hear it in most daily situations.

I still do carry hearing protection with me everytime I go outside but most of the time I don't need it, or just put it in to feel safe, or to avoid unpredictable loud noise.

It's great to hear you've had such a massive improvement in just one year! Thank you for coming back and giving us an update, it's really really appreciated

You mentioned having minor spikes due to using the hair dryer. Did you ever get reactivity/spikes from artificial audio? And you mentioned your tinnitus becoming lower now, do you still have any reactivity?

After you had lunch with your friend, and then worsened, how would you describe your improvements from then? Did your tolerances come back fast? What did you do to improve?

In regards to TTTS, is it solely activated by sound or do you ever get it from touching your face/head or certain movements? Do you think you have good posture? Are your shoulders and neck tight? I believe you mentioned TMJ, is that still an issue for you?

I mention this because I also have TTTS, although 'minor' at this point. Early on, my ears would thump due to impact sounds. They don't do that anymore. However, they still thump quickly at times when I touch my face/head and make certain movements. I've noticed that it isn't solely from touching my face. For example, the TTTS will activate if I'm touching my face or the region above my ears AND if I have my neck/body turned in a way that tightens certain muscles. If I return to neutral posture, and then touch the same area, the TTTS doesn't activate. I've had bad posture for years, so I feel like that may be a partial culprit. Lately, I've been working on my posture and stretching more and I have less TTTS events. But on days that I let myself slide and not focus on my posture, it will activate more often. It seems like there's a correlation, for me at least, between bad posture/muscle tension and my TTTS (perhaps even my tinnitus and hyperacusis too). I'm going to continue working on that but would love to know if you had a similar experience as I with posture and tension.

And again I'm really happy for your improvements! It brings me joy to see people able to escape this hell