What Could I Do Myself to Improve My Hyperacusis?

[LanaK]

Dr. Nagler,

Thank you for all kind help and support you are so selflessly giving to us. I've been reading your answers regularly and most were very helpful to me.

But even if you have answered some of my concerns, especially in regard to tinnitus, I still have some doubts and questions about hyperacusis.

A little history of mine: I got tinnitus (very high pitched, unmaskable, fluctuating) one year ago after few years of severe stress events and one week after too loud concert, one and only in decades. I am 60 y.o. female. One and half month after that I got hyperacusis, worser in left ear, which I would rate as quite severe. I have moderate high frequency hearing loss in that ear at 8 Khz (50 dbs), other things are normal for my age. MRI exam was fine, so was ENT exam.

At beginning even typing on keyboard or switching on a light or flushing a toilet irritated me, besides all other things that people here report (a running water, dishes, birds singing etc.). Severity lowered a bit after few months, but still I was not be able to be in a restaurant, in a room with more people talking etc. In November it suddenly became worse again (one week after dental work, one day after very stressful event on which I just couldn't calm myself down no mater what I tried). MRI followed two weeks after that as well. Since then it hasn't improved at all, what more, I got occasional like spasms in my left (worse) ear, some kind of pressure, pain, even in face or head, which I didn't have before. If I breath more deeply, I feel like the air goes directly into my ear and irritates me deep inside, like if I have a wound there. I also have to talk quietly as even my own voice irritates me, what to say other people's voices.

I also have some kind of distorted hearing, all music, especially high frequencies are very amplified, more metal and somehow vibrating in my ear. Hard to explain, but for sure not pleasant to listen to music at all. For that reason I can't have a lot of background music for my tinnitus (white noise, pink noise, rain, water running etc. irritate to much). Just to add: I don't overprotect my ears at all, except if I have to go to restaurant during lunch time, at work if I have a client, when dying my hear, vacuuming etc. I rather avoid too loud situations because my tinnitus is too loud to be able to block the outside noise too often with plugs. I still work (office work), even if it is not easy at all. It is either too quiet or too loud, when people rush in and around, doors slumming, laughing. I feel somehow that all the energy I have left is used for going through the day without exposing myself to too harsh, loud, irritating noises and to dealing with tinnitus.

So to my question:

• What could be done by myself to improve my hyperacusis?
  
  I must say that doctors here in my country are helpless, TRT is out of question as nobody offer it. I read a lot about my condition on net, the most common approach is sound therapy which I find difficult as all sounds irritate me. I haven't tried white noise in ear generators because nobody offers it, nor the counselling. How to start? What to use instead of in ear noise generators? Or is it better just to be in relative silence for some time?
  
  
• Does sound distortion improve with time? How long can it takes? Should I listen to music on very low volume nevertheless (e.g. at work place) or better to just leave it?
  
  
• Am I preventing possible improvement if I am daily exposing myself to "ordinary" sounds which are not loud at all, but irritating to my ears nevertheless (running water, dealing with papers at my desk, far away traffic, normal talk, careful handling with dishes), even if such sounds will not cause a damage to my hearing system?
  
  Should I protect my ears when sounds are louder and painful, but not too loud for other people (like laughing at work place, louder talks, restaurants without any music, walking by not too busy street etc.)?
  
  
• Is it OK if I plug one ear only because in most situations when there is only moderate noise around that would be enough to take the edge off.
  

I apologise for a bit long post and a lot of questions, but any advice would be greatly appreciated as I have no one here to ask such questions. Thanks a lot.

Lana

 

[Dr. Nagler]

Hello @LanaK. Thank you for your interesting question. It appears that with both tinnitus and hyperacusis, you are walking a tightrope. I would like to look into various options for a "Do It Yourself" approach towards a path to relief for you and will finish my response when I have a recommendation for your consideration. In the meantime, let me say a word or two about the nature of hyperacusis so we are all on the same page.

I clearly understand that some hyperacusis sufferers might disagree with the view I am going to express below; however, as I have come to see it, hyperacusis is primarily a disorder of central auditory processing rather than a direct reflection of cochlear pathology. In other words, hyperacusis represents a decreased threshold for discomfort, but there is no evidence that it represents a decreased threshold for damage.

We are blessed with a very elegant yet simple protective feedback mechanism to minimize damage and maximize the chance for survival. In the kitchen, for instance, if you accidentally touch the red-hot element on your electric range, you immediately withdraw your hand in pain. The pain is thus an appropriate sign of impending damage; if for some reason you do not withdraw your hand, damage (i.e., the destruction of your finger tips) will immediately ensue. So your protective feedback mechanism is working properly. When you grasp a warm glass of water, however, you do not withdraw your hand because there is no discomfort; here again your protective feedback mechanism is working appropriately because there is no impending damage to your hand from a warm glass of water.

Now what would happen if there were a mismatch in your feedback mechanism? You would rapidly withdraw your hand from the glass of warm water because you would experience discomfort, discomfort in the absence of impending damage. So this mismatch in the feedback mechanism would result in a decreased threshold for discomfort, but not a decreased threshold for damage. In the case of hyperacusis, there is no evidence that there is a decreased threshold for cochlear damage, only that a sound well-tolerated by some is uncomfortable or even painful to others.

I do not mean in any way to underestimate the magnitude of what can be a very serious - even incapacitating - problem; I wish only to clarify its nature as I have come to see it.

Please check back in a day or two when I have given more thought to a "Do It Yourself" approach.

Stephen M. Nagler, M.D.

 

[Dr. Nagler]

@LanaK, I have had a chance to give your situation a bit more thought.

I think it is important to have your Loudness Discomfort Levels (LDLs) checked by an experienced audiologist and have them re-checked every few months as you progress in your program. Most experienced audiologists do not know how to do LDL testing unless they are particularly experienced in the treatment of individuals with hyperacusis, and it seems from your post that you do not have ready access to that sort of resource. So my suggestion would be to find an experienced audiologist whom you trust, and point him or her HERE to the monograph on LDL testing published by the British Society of Audiology so your audiologist can learn to test LDLs properly. The BSA calls the test ULL (Uncomfortable Loudness Level), but it is the same thing.

Now as I see it, the entire key to improving sound tolerance lies in desensitization, by which I mean very gradual but purposeful exposure to increasing loud sound over time. This process should not be painful at all, but at the same time it is important to push the envelope just a bit. Since you do not have access to anybody with experience in the proper fitting and adjusting wearable broad band sound generators like the ones used in TRT, you might check out the pink noise CDs or thumb drives available through the Hyperacusis Network, which come with a rather detailed instruction sheet on their use. Note that instructions include an extensive disclaimer because to the best of my knowledge they were not written by an ENT or audiologist. As a matter of fact, I very strongly recommend that you enlist the aid of your audiologist to walk you through the entire process.

Regarding your other questions, I would not put a calendar on desensitization - there is no set time frame. And I hasten to add that all of the above assumes that you do, indeed, have hyperacusis and not some other form of decreased sound tolerance.

With respect to your "sound distortion," that is not part of your hyperacusis or your tinnitus, and I honestly do not know what to make of it. It may simply be a matter of your entire auditory system's being on "high alert," thereby magnifying symptoms that might otherwise go unnoticed. But really that's just a guess on my part.

You ask if your are delaying improvement by exposing yourself to "ordinary" sounds that are not too loud but are still irritating. Assuming that your decreased sound tolerance has been correctly diagnosed as hyperacusis, the answer is no. On the contrary, exposing yourself to a wide variety of sound is exactly what you should be doing.

Last, I am not a fan of plugging one ear "to take the edge off." Your auditory system thrives on sound. I suggest you not block access to it unnecessarily.

I want to stress that what I have given you above is a general outline. It might be right for you; it might not. But I hope that at least it points the way.

All the best with it -

Stephen M. Nagler, M.D.