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Rick

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Reply with quote  #1 

I was just wondering if anyone else with hyperacusis also has a problem with light sensitivity. Or any eye problems. 

I got hyperacusis and tinnitus way back in the 70s - mostly in my left ear.  I got H & T from one of the usual sources... long exposure to extremely loud music. 

Back in the 70s, of course, they knew less than nothing about hyperacusis.  Then, in the 80s, the ear doctors (not knowing what else to do) sent me to the TMJ dentists, where I was promptly diagnosed as having TMJ.  It was a misdiagnosis.  Back then, if you mentioned any ear symptoms, they immediately thought you had TMJ.  I didn't have it, as it turned out.  But they did manage to create a TMJ problem.  An overzealous physical therapist over-stretched my jaw and now I do have TMJ pain.  But I deal with it.  

Lately, for the last few years, I've developed photophobia in my left eye.  It's an extreme sensitivty to light.  Going out in the sun is like sticking a knife in my eye.  This really limits my life.  No more nice long quiet walks in nature.  

I definitely feel that the hyperacusis and the light sensitivity are somehow related.  After all, it's my left ear that is hyperacusic, and it's my left eye that is extremely sensitive to light.  Anyone else experience anything like this?  




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Johnloudb

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Reply with quote  #2 
Sensitivity to sound and light and other senses can be related. Perhaps you have global hypersensitivity.

Have you done any treatment for your sound sensitivity? If you treat that, you may also find it helps with your light sensitivty.

I have had both and treatment is similar ... I used light enrichment as part of my treatment.

People often over dramatize their pain as well ... Saying things like it feels like some stuck a dagger in your eye is not helpful. I guarantee that if someone stuck a dagger in your eye you'd think think different. People often say the same about a dagger stuck in their ear, same thing ... It isn't helpful and I do just the opposite for a reason. I say my pain is no big deal, when I experience it. That's not to say I try to hurt myself either, the more we react to pain the more it reacts to us!
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Rick

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Reply with quote  #3 
Hi John, thanks for the response.  Yes, I've done TRT.  In fact, I was fortunate enough to do it with Dr Jastreboff himself.  And since Dr Hazell was visiting from the UK, he saw me, too.  This was back in the 90s when Dr J was still in Baltimore.  They were great.  It helped a lot and I was better for a long time.  Perhaps I got too careless and pushed my luck, because lately the H has gotten worse again.  

You say you used "light enrichment" as part of your treatment.  What is that?  I try to expose myself to as much light as I can tolerate every day.  I've seen every ophthalmologist and neuro-ophthalmologist in California, and had every test imaginable done.  The leading "theory" is that some peripheral branch of my trigeminal nerve is irritating something or other and it's causing the left eye photophobia.  But who really knows?  

And I agree, having a good attitude is extremely important.  It definitely helped with the hyperacusis.  I took Dr J's advice and just started going out and doing things, instead of hiding inside and avoiding sound. He said normal sounds wouldn't further damage my ears, which of course is everyone's main fear. And he was right.  Now I'm wondering the same thing about my eye.  If I can be assured that the eye pain from the sun isn't actually damaging my retina, then I'll just deal with it. I just don't want to make anything worse.  I'm seeing a neuro-ophthalmologist this week to talk about this.  



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Originally Posted by Johnloudb
Sensitivity to sound and light and other senses can be related. Perhaps you have global hypersensitivity. Have you done any treatment for your sound sensitivity? If you treat that, you may also find it helps with your light sensitivty. I have had both and treatment is similar ... I used light enrichment as part of my treatment. People often over dramatize their pain as well ... Saying things like it feels like some stuck a dagger in your eye is not helpful. I guarantee that if someone stuck a dagger in your eye you'd think think different. People often say the same about a dagger stuck in their ear, same thing ... It isn't helpful and I do just the opposite for a reason. I say my pain is no big deal, when I experience it. That's not to say I try to hurt myself either, the more we react to pain the more it reacts to us!
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Johnloudb

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Reply with quote  #4 
Yep, do talk with doctors and get any other problems that could be causing the sensitivity ruled out. 

Light enrichment is a pleasant light you have on all the time. I used a little lamp with a red lamp shade, only 40 watts in the corner of my room, even at night. 

I've had lots of sensitivities and never think about damage anymore. I found gradual exposure desensitization and CBT works with every sensitivity I've ever had regardless of the cause.

Broadband noise for ears has been helpful too. 

With light I just tried, and did CBT. It was not easy of course, took years to overcome ... hard to explain in a post. But I dealt with it pretty much like I did with my ears. Sometimes I had to face some discomfort but I also knew when I had enough. 

Glad you had some great help in the past ...


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gardennut

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Reply with quote  #5 
This is all very interesting. I hesitate sometimes to mention my other sensitivities as I have felt in the past some resistance from some here to believe me.
I also have some electrical sensitivities and have had chemical sensitivities for many years from exposure to many years of second hand cigarette smoke in my work place. I feel the toxic overload can, in some people , cause many problems of different sensitivities,, maybe related and maybe not. Of course this sort of thing has not been studied much if at all . so my theory is " anything is possible" .
Whatever works is my philosophy..... P S. I find growing food in my garden a great stress reliever and gives a sense of accomplishment and good food for my health.... Ciao Donna

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Madmaggot

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Reply with quote  #6 
I do not have chemical sensitivities but know people who do. One was exposed to chemicals in the printing industry for many years and now cannot go into a room of people as the chemicals from people's hairspray, perfumes, deodorants etc make him even sicker. This is a real problem for many people and they are often treated like they are nuts!
Light sensitivity and ear problems
I have for seven years had a Geiger counter noise in my left ear and my left eye moves and jumps in time with the noise. It makes me dizzy and has been hard to balance. It took me years to learn to walk and function with it. I feel fleurescent lights affect my eye and make the noise and vision jumping worse but doctors have not been able to come up with any answers.
Definitely I think light can affect not just your vision but your ears. How? I have absolutely no idea!
Recently I got a TMJ splint and this problem which almost drove me to jump off the roof is almost completely gone. It's like a miracle to me after seven years of hell. So I appreciate that a TMJ splint was not needed in your case and has caused problems but for me it has been wonderful. I would add I also think it is associated with the trigmenal nerve as if I touch the left side of my face near my mouth I get a strange sensation and noise in my ear. Also I had at one stage pain in my teeth so that I could not brush them it was so bad.
The trigmenal nerves go from the ear to the eye, nose and mouth so I am sure there is a likely connection there. What to do about it I don't know, but for me the TMJ splint has been wonderful. I had three D scans of my skull showing my skull was deformed from birth and as I have aged it has begun to cause problems. I'm now 48.
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Margy

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Reply with quote  #7 
Hi, Johnloub and Rick.  I'm pretty new to the network, but I want to ask for your experience, because I'm having some of the same or similar things you describe, and it sounds like you both have had a lot of experience. I have visual sensitivity as well as pretty bad hyperacusis, and I don't quite know what to do about it. I have read Jastreboff's book about TRT and so I know some theory, but I am alone in trying to do something about it. I'm trying out ways to listen to pink noise.

But about the visual symptoms: Ever since I really began to notice that this hyperacusis was significant, I have also been sensitive to light and especially to movement. For example, I really flinch when there is movement on a web page (and many, many web pages have moving, flashing images, especially when I am looking at a public computer, like at the college where I teach). At home I have Adblock, which is helpful. But when things on a computer scroll up or down or sideways, muscles in my head flinch very unpleasantly.

This is very much connected to my hyperacusis. It all started at the same time, and both visual and aural stimuli produce similar effects. However, the hearing is much more severe than the visual. After all, I can always close my eyes, but I can't really close my ears. (Fingers in my ears is my defense, but that is limited) My vision causes flinches and a quick unsteady feeling, but my hearing produces these symptoms plus pain. It's the pain that scares me.

Rick, I am sorry to hear that you are so very sensitive to light. I know my sensitivities are global, because I have burning in my ears that also affects my other nerves nearby, including flinches in all my head muscles. But I depend on walks in the sunlight to keep me feeling good or as close to feeling good as I can get. Nature is my healing balm, but sometimes things get in the way. I hope you can figure out how to desensitize your vision.

Johnloudb, it sounds like you have lived through a lot and figured out a lot of ways to deal with it all. I can see in your responses to many posts that you have absorbed a large amount of information and thought a lot about it. You know how to dismiss some worries (such as tinnitus) and not pay so much attention to them, because you know that they get worse with too much worry and focus.

But my worry right now is, am I making my hyperacusis worse by leaving myself open to so many sounds? I don't use earplugs or anything, preferring to leave my ears open (sensitivity to touch discourages that anyway). My hyperacusis has gotten worse lately. It's not due to overprotection. I think it may be because I have left myself open to too many irritating sounds. Yes, I know my ears are fine. It's my sound processing that seems to be over-reacting. I don't know how to balance protection with openness to sounds. I want to just ignore it and be normal. but it has gotten worse lately.

Any advice? Thanks. Margy
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