Eye Symptoms Related to Hyperacusis

[Juan]

Do any of you experience eye symptoms related to hyperacusis, things like pain behind or around the eyes, floaters etc, that are triggered after being exposed to loud noise?

 

[ozgeA]

No.

 

[Rojo]

I have light/motion sensitivity, sometimes eye twitches, regular floaters... hard to tell if its my T/H or if its the benzos im on that I desperately wish I could get off of.

 

[dingaling]

Go and get your eyes checked

 

[Juan]

Go and get your eyes checked

I did. It was all fine apparently. Maybe it is just normal.. some days one is more tired than others.

 

[EDogg]

@Juan Yes, I do. I experience increased photosensitivity, pain around eyes, and get migraines, associated with hyperacusis. These are amongst several other co-occurring symptoms that I believe to be interrelated.

 

[Juan]

@Juan Yes, I do. I experience increased photosensitivity, pain around eyes, and get migraines, associated with hyperacusis. These are amongst several other co-occurring symptoms that I believe to be interrelated.

My guess is my hyperacusis may be related to damage to the hearing nerve and it interacts with the visual nerve and surrounding areas, specially after exposure to loud sounds or when I am really tired..

Do you experience the eye symptoms after noise, or how do you link them to your hyperacusis?

 

[EDogg]

@Juan I have many increased sensitivities since my hyperacusis began. Light is one of them. Sound sensitivity is the most pronounced, by far, and is quite severe. Your hypothesis is interesting regarding the underlying pathology. I believe my pathology lies within the brain itself, given all my co-occurring symptoms, and that they are bilateral and symmetric. This seems to be supported by the experienced clinicians I have consulted in this field.

 

[ozgeA]

Sensitivity to the light could be #migraine related.

 

[EDogg]

@ozgeA Exactly. I think these symptoms are all interrelated, at least for me and probably others.

 

[Juan]

@Juan I have many increased sensitivities since my hyperacusis began. Light is one of them. Sound sensitivity is the most pronounced, by far, and is quite severe. Your hypothesis is interesting regarding the underlying pathology. I believe my pathology lies within the brain itself, given all my co-occurring symptoms, and that they are bilateral and symmetric. This seems to be supported by the experienced clinicians I have consulted in this field.

Have you had hyperacusis for a long time? Have you lost hearing due to loud noise?

 

[EDogg]

@Juan 18 months now. Pretty severe, with a LDLs ranging from 60-70 at 1 kHz to 40 at 8 kHz. Lots of mild improvements followed by setbacks, so not much baseline change despite attempts at TRT, modified TRT, music protocol, sound enrichment, multiple meds, etc. My desensitization practice essentially is limited by ear pain. I have to be very careful around sounds. I do not have any hearing loss.

 

[Juan]

@Juan 18 months now. Pretty severe, with a LDLs ranging from 60-70 at 1 kHz to 40 at 8 kHz. Lots of mild improvements followed by setbacks, so not much baseline change despite attempts at TRT, modified TRT, music protocol, sound enrichment, multiple meds, etc. My desensitization practice essentially is limited by ear pain. I have to be very careful around sounds. I do not have any hearing loss.

It's soon for hearing loss, be very careful. You are very new to hyperacusis, only 18 months. I have had it for many many years. Try not to be exposed to loud noise. My LDLs were worse than yours, and hyperacusis goes up and down, feel better for a few weeks and then worse. One has to be on guard to avoid loud noise, and it is not always possible.

When my hyperacusis was at my worst I could feel the sound go through my head, literally, very painful, even with double protection (earplugs plus earmuffs). Specially very loud bikes or car horns, traffic noises impossible to avoid if you sometimes have to set foot on the city centre.

 

[EDogg]

@Juan Thanks for the advice. 18 months is very new? Feels like it's been eternity at this point. I'm sorry that you've had such a bad case of hyperacusis as well. You mentioned your LDLs were worse than mine at some point, so I am assuming you have made some improvements since then? If so, what have you felt have been the most effective treatment(s) in your case?

 

[Juan]

@Juan Thanks for the advice. 18 months is very new? Feels like it's been eternity at this point. I'm sorry that you've had such a bad case of hyperacusis as well. You mentioned your LDLs were worse than mine at some point, so I am assuming you have made some improvements since then? If so, what have you felt have been the most effective treatment(s) in your case?

Hyperacusis can improve but very slowly, and setbacks may make a lot of damage. In my case, I have always tried to carry on living as normally as possible. This means I work a full time and very demanding job that also means being exposed to noise. For a couple of years I was able to redesign my life to adjust to hyperacusis, moved to a quieter place and to a less demanding position at work. However, there was a point when occassional and accidental exposures to very loud noise (by any standards), at decibels of 100 +, made a lot of damage and I thought that I would try to go back to a tougher position at work.

The lessons I have learnt from all this journey is that no matter how hard you try to adjust everything to avoid noise, you are going to find some very loud noise sometimes. Examples of noise that made me worsen is driving near construction and someone using power tools near my car, or being stuck in a traffic jam and suddently facing a protest by taxi drivers who are all honking. This kind of things happened even if I seldom go to cities.

Ridiculous things have happened too, and the perfect example is going to the countryside just to walk and being around nature. I was on a dirt track with very dense trees and plants on both sides, on a working day, maybe it was like March or April, and there was total silence, and suddently a super loud enduro bike appears and heads straight towards me, with no possibility to go anywhere, so I just cover my ears. Very bad setback.

I have lost hearing due to episodes like those above, plus the daily noise at work.

Now I can tell you too things that helped: healthy diet, a bit of exercise, just walking or swimming a little, or biking can help, gyms are complicated as there will be loud sounds or loud music, so I dont go to the gym. You have to find a way of being around sound and listening to music at a volume you are ok and comfortable with. And the most important thing is to avoid the really loud sounds, like a Harley bike roaring past you, or someone using a jackhammer nearby, power tools, firecrackers and fireworks at Christmas, demonstrations and protests, loud amplifies noise, noisy venues or noisy restaurants etc As you can see, this is not going to be possible, there will be times when accidental exposure happens.

If you are exposed to noise try to spend time recovering. The times of recovery are a very good indicator of improving from hyperacusis or worsening. At my best I would recover in around 2 days, and for the worst setbacks, and more often these days, it takes me 2 or 3 weeks to recover from exposure to a bad sound.

It is hard to be rational with and come to terms with something so strange and hard to understand as hyperacusis. Do not try to understand it, just try to live the better life you can with it, and to make the best choices you can. I hope this helps and being only 18 months into hyperacusis you still have a chance to be ok. I would say that after 2,5-3 years with hyperacusis the chances of feeling ok again and having pretty normal hearing back diminish significantly.

 

[EDogg]

@Juan Thank you so much for sharing your thoughts. Yes, this is very helpful for me to hear. I have a similar approach to this as you... regardless of what my H is doing, I try to get on with my life. I, too, continue to work and, although it's been extremely difficult at times, refuse to give up on something I have trained so hard to do, that gives me purpose and allows me to help others. Thus far in the recovery process, any improvement I have gained has been my ability to cope with and navigate around my hyperacusis, not any noticeable consistent improvement in the condition itself. I still hold on to hope that this will slowly recover over time, and continue to try to allow sound in my life yet avoid, as much as possible, loud sounds. I am fortunate to have help from some of the best minds in Hyperacusis research and treatment, but in spite of that, there is still so little understood about this condition.

 

[Lane]

I believe my pathology lies within the brain itself

Hi @EDogg -- You might find this article interesting: Tinnitus reduced or even eliminated by device that resets brain activity. Here's a snippet:

"The brain, and specifically the region of the brainstem called the dorsal cochlear nucleus, is the root of tinnitus," says Susan Shore, the U-M Medical School professor leading the research team. "When the main neurons in this region, called fusiform cells, become hyperactive and synchronize with one another, the phantom signal is transmitted into other centers where perception occurs. If we can stop these signals, we can stop tinnitus. That is what our approach attempts to do."
-
Some reported up to a 12-decibel reduction of the ringing in their ears, others reported a reduction in harshness or that their tinnitus became less piercing, and two patients reported it was completely gone. Nobody's symptoms got worse, and the effect persisted for at least a few weeks on average. ......... It's too early to talk about commercialization, or what the treatment might cost, but it seems like we tinnitus sufferers have a genuine hope of being free from this condition sometime in the coming years."

 

[StJWahrl]

My brother had probably hyperacusis for about two months. He wears the earmuffs (3H) all the time, except when he's sure no sound is going to surprise him. It's been so hard times for our family, as we don't know how to help him.

Regarding this topic - it's been about two or three weeks that he can't normally use eyes. He is avoiding strong light and has eyes closed I guess all the time, because he behaves like a blind person (feel and touch instead of seeing things).

He says (or whispers, because he can't use his voice, since it hurts him) that being exposed to strong lights or even the changes of lights from dark to light or vice versa makes him very uncomfortable feelings in the eyes. Maybe eye pain too. He's not very open about it.

I wish we can find some help soon...

 

[Born To Slay]

My brother had probably hyperacusis for about two months. He wears the earmuffs (3H) all the time, except when he's sure no sound is going to surprise him. It's been so hard times for our family, as we don't know how to help him.

Regarding this topic - it's been about two or three weeks that he can't normally use eyes. He is avoiding strong light and has eyes closed I guess all the time, because he behaves like a blind person (feel and touch instead of seeing things).

He says (or whispers, because he can't use his voice, since it hurts him) that being exposed to strong lights or even the changes of lights from dark to light or vice versa makes him very uncomfortable feelings in the eyes. Maybe eye pain too. He's not very open about it.

I wish we can find some help soon...

Your brother should see a neurologist. The only thing that can be done for these conditions that might help are drugs.