Extreme Sensitivity to a Lot of Sounds — What to Do?

Discussion in 'Support' started by msintros, Jul 1, 2019.

    1. msintros

      msintros Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Unknown
      I don't even remember how long this has been going on, but at least 10 years, probably longer. I am extremely sensitive to a lot of sounds, particularly high or mid range sounds. They do not even have to be loud at all, in fact, the worst are soft sounds. A piece of silverware gently knocking against a plate, paper or plastic being crinkled, certain people's voices, etc. They cause my eardrum to spasm once (at the onset of the sound).

      It is not a rhythmic thing, it does not occur by itself, it is only induced by sound.

      It is only on the left side. Never on the right.

      It is not painful, per se, but it is incredibly annoying and makes it difficult to focus on or enjoy things when it is happening. Quite often while watching a movie, I will simply be sitting there with my left hand holding the cartilage of my ear shut.

      It is difficult to 100% predict. This has been the most frustrating aspect of it, because I have had several instances of going to ENT and having a difficult time even reproducing the symptoms using various kinds of sound stimulus, even though in my everyday life it seems impossible to escape. It is like I am the victim of some awful cosmic joke where the problem only manifests when there are no witnesses.

      It is *not* in my head. It does get better and worse at times, but it never goes away. I will go through periods where it is all I can focus on for weeks at a time and my jaw actually gets sore and irritated from clenching due to the constant barrage of spasms and just generally knowing certain sounds are going to trigger it and eventually I will sort of learn to relax about it and it won't be so everpresent, but it is *never* gone. I will have mostly ignored it and I will still feel it happen. At my best I can not get hung up on this isolated spasms and not descend back into the nightmare of it consuming my every waking moment.

      Ear plugs do *not* really work. I have a set of really intense ear protection headphones (the kind you wear when you go to a shooting range) and those will mostly stop it, but that should tell you something about the sensitivity level here, as you can hardly hear anything with those on. Ear plugs only accomplish the additional annoyance of having ear plugs in and do not stop the symptoms, the ear is simply too sensitive and the required sounds, as I said, can be incredibly soft.

      As I said, I have seen several otolaryngologists. A few of them just told me I have sensitive hearing and dismissed this outright. This is not "sensitive hearing" or it would not be present in both ears. It is a distinct sensation that exhibits certain distinct characteristics. I am a musician and audio engineer (which makes this even worse, because it impacts what I do and love, but it also gives me some tools and framework for understanding this). I can practically measure the exact amount of millisecond delay between the stimulus sound and the spasm (around 30 ms). I also determined a rough frequency range that is the worst (about 2.5-6 khz). It mostly affects sounds with a distinct transient, but sustained tones in the range described are capable of producing it as well.

      There is one otolaryngologist who has humored me and seems to believe that what I'm saying is true and has not dismissed my symptoms as me being crazy or sensitive. But at the same time he has not been able to objectively observe anything. He has on two occasions attempted to look at the ear from the outside to see if he can visually confirm abnormal contractions but has not seen any. He has said that he is willing to perform a lysis of the external tendons and he thinks that would eliminate my symptoms but I am *incredibly* wary of this procedure for two reasons: 1. I have read that some people have this done and their symptoms end up being even worse or have other problems 2. Without him being able to confirm where the problem is, I am reluctant to sever things irreversibly and not even have solved the problem.

      A couple of other pieces of information:

      I have patulous eustacian tube in my right ear (opposite side as the above-described problem). I feel like sometimes this problem is worse when the patulous eustacian tube is worse, but there is not an exact correlation as far as I can tell. I do wonder whether some of my coping strategies for the PE have exacerbated something in my palatal areas that have caused this problem. These coping strategies involve inhaling quickly through my nose to cause negative pressure to close the PE and just generally tense palatal habits.

      I can usually manage to stop or almost stop the symptoms entirely by holding my breath, tensing the muscles in the back of my nose so that no air can come in, sucking in the pressure such that the inside of my head feels like a vacuum and tensing my throat/ear muscles almost as though I were doing a really intense yawn. But obviously I can't hold that for very long.

      My left ear/jaw joint is kind of messed up. I was in an accident when I was 17 where I broke most of the bones in my face. I did not break this particular area, but I do think that my jaw was dislocated and this is probably how that happened. My bite is off and, most importantly, the way the jaw now sits on the left side is such that it is not hard for it to feel like it is "catching" on the inside of my ear cartilage. If I bite even a little off angle, I can hear it kind of grinding on it, and if I try to actuate my jaw while any pressure is on my ear from the outside (like wearing headphones or even lightly pressing on it with my hand), it can "catch" entirely and there is an unpleasant feeling almost like a rubber band being snapped as the cartilage kind of skips over the edge of the jaw. Using my hand to pull the ear slightly out or back alleviates this, meaning I can actuate my jaw freely and it is not unpleasant. I am not sure if this is related at all to the problem but reading about the trigeminal nerve and where it is located has made me wonder for quite some time if this is the entire cause of the problem.

      So that is a lot to read. If you made it this far, thank you. I basically don't know what to do. I am discouraged at the lack of attention various doctors have given me. I am afraid to get the only surgery that has thus far been proposed because I worry that it won't solve the problem or it will make things worse. I don't know if I should pursue the jaw angle (I did see a TMJ doctor once who told me I have "mild" TMJ but when asked whether it would cause hearing sensitivity was very dismissive of the possibility). All I know is that when this gets bad I feel like I just can't live with it any more. I manage to kind of hide from things until it gets a little better and then I try not to let it distract me and pull me back down and sometimes I manage for a short time but then inevitably it comes back and destroys me again. I can't keep doing this for the rest of my life. I sometimes feel like if I didn't have a family or any pets I would just kill myself even though I'm not at all suicidal.

      Does this make sense to anyone? What would you do if you were me?
       
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    2. Digital Doc

      Digital Doc Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      noise induced
      Sounds like a severe case of hyperacusis. Perhaps I missed it, but do you have tinnitus also? Also, the question is what is the source of all of this? Do you have occupational noise exposure?
       
    3. AUTHOR
      AUTHOR
      msintros

      msintros Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Unknown
      Hi, thanks for reading.

      I'm not sold on this for several reasons. First of all, no I don't have tinnitus. I also don't have occupational noise exposure. I also don't have any noticeable hearing loss (my hearing tests all come back normal to excellent). These seem to be the hallmarks of hyperacusis, but I am of course not an expert.

      My understanding of the term hyperacusis is that it's kind of an umbrella term for symptoms that potentially have more than one cause. It could be that this would technically be classified as hyperacusis but that doesn't seem to get me any closer to understanding what it really is and what potential treatments would be.

      One other thing I forgot to mention...

      There is one thing I can do that will cause a slightly modified version of the same sensation (it's still a twitch in the same ear but does not feel quite as 'sharp') with no sound stimulus. If I jerk my head in a certain direction especially going from looking down and pulling my head back as if I'm looking up, I feel it. This more than anything suggests to me that this is not merely a case of typical hyperacusis, that there is some clearly anatomical (for lack of better word) or physical cause.
       
    4. Digital Doc

      Digital Doc Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      noise induced
      What you are describing is classic hyperacusis, but realize this is a symptom, such as a cough, or chest pain- but not a diagnosis of what is causing it.

      "Some first develop hyperacusis in one ear, but in most cases both ears ultimately become affected. Hyperacusis can come on slowly or suddenly. Some patients say they developed hypersensitivity to sound over a period of time. Others may come down with hyperacusis suddenly by attending a rock concert, firing a gun, air bag deployment in their car, fireworks or any extremely loud sound.

      Other causes may include job related noise exposure, drugs, Lyme's disease, Meniere's, Temporomandibular Joint Syndrome (TMJ), head injury, Superior Canal Dehiscence Syndrome (SCDS), postoperative surgery, autism or Down Syndrome."

      http://www.hyperacusis.net/what-is-it/what-causes-this/

      It can be related to a jaw or spine issue, which it sounds like you are describing.
       
    5. AUTHOR
      AUTHOR
      msintros

      msintros Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Unknown
      Thanks, so it sounds like if you were me you would pursue the jaw issue more? I know you can't diagnose me over the internet, but from what I've said and knowing apparently more about this than I do, you don't think it's unreasonable that my jaw really could be the cause of this? Is there evidence that resolving the underlying cause like fixing a displaced jaw can cause a reversal of the symptoms of hyperacusis?
       
    6. AUTHOR
      AUTHOR
      msintros

      msintros Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Unknown
      Hi Michael, I appreciate your response, however I have to say I think you're being quite presumptive. Not all musicians are exposed to lots of loud sounds. I certainly am not. I am always very careful about not exposing myself to high decibel levels. I rarely use headphones and when I do I limit the time and level that I am listening with.

      I also don't know what makes you say I have tinnitus. Unless you classify the twitching sensation I feel in my ear as tinnitus, I do not have it. I have no ringing or anything like that in my ears.

      It's odd to me that of all the information in my post you fixated on one particular detail of me being a musician and seem to discount everything else that contradicts your diagnosis.
       
    7. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @msintros

      I wish you well and hope your situation improves.
      All the best

      Michael
       
    8. Cojackb
      Fine

      Cojackb Member Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Unknown
      I had (and still have) a sensitivity to sound, mostly noises like cutlery, china, light switches clicking and plastic film wrappers but I also had EXTREMELY mild Tinnitus, so mild in fact that 99% of the time I couldn't tell it was there. It's much louder now but that's another story, entirely. Like you, I also get this "spasm" but I am fairly confident that this is TTTS, have a read of the below.

      http://www.noiseandhealth.org/article.asp?issn=1463-1741;year=2013;volume=15;issue=63;spage=117;epage=128;aulast=Westcott

      http://www.hyperacusis.net/other-factors/tensor-tympani-syndrome/


      What you're describing sounds very similar although you do have a number of other "symptoms" which could be contributing.

      I got prescribed WNGs (White Noise Generators), basically hearing aids with the hearing functionality switched off. According to the Audiologist, these help to desensitize the ears and bring your baseline back up to a more natural level. I won't pretend to know the science behind it but they've worked for me so far. I now notice the "spasm" occurs much less frequently and sounds around me aren't as overbearing as they were previously.

      Maybe something to look into!
       
    9. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @Cojackb

      Continue wearing the white noise generators as you have been advised by your Audiologist. They are the best devices to treat and cure hyperacusis: over sensitivity to sound. Most people (but not all) that have an over sensitivity to sound, it is a result of exposure to loud noise, which will usually begin with the onset of tinnitus. Even though tinnitus can reduce to a very low level for some people, if the the hyperacusis is not treated such a person will always have problems with over sensitivity to sound. If you use headphones then I advise you to keep the volume as low as possible, if you can stop using them.

      Hope you continue making improvement.

      Michael
       
      Last edited: Jul 2, 2019
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    10. Cojackb
      Fine

      Cojackb Member Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Unknown
      Awesome advice as always Michael, appreciate it!
       
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    11. AUTHOR
      AUTHOR
      msintros

      msintros Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Unknown
      Thanks for the info. So you use kind that are like hearing aids that go in your ears? Do you wear them all the time or just intermittently? How audible is the white noise? Is it at such a level that it's unobtrusive or is it something you pretty much always are conscious of?
       
    12. Tweaker
      Transparent

      Tweaker Member Benefactor

      Location:
      UK
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      Noise exposure
      Yes wearable white noise generators worked for my hyperacusis. I noticed a difference even after a couple of weeks. Need to wear them for 8 hours a day at a low level so not intrusive. I still a degree of sensitivity in my left ear but not too problematic these days.
       
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    13. Cojackb
      Fine

      Cojackb Member Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Unknown
      Pretty much what Tweaker has said - there is a volume rocker switch on the back of each device. When going into louder environments you increase the white-noise and then decrease when in quieter areas. They're very discreet and small with only a small transparent wire going into your ear.

      If you get them fitted by an Audiologist or healthcare professional they'll calibrate the devices so the volume is accustomed to your preference.

      Yes the white-noise is noticeable but very easy to get used to and I can categorically say it's better than sensitive ears or ringing.
       
    14. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @Cojackb

      I would like to make a few suggestions and hope that you do not mind. I have worn white noise generators for 20 years, and use them whenever required, as my tinnitus is variable from: complete silence, mild, moderate and severe. It can also reach very severe levels where I need to take clonazepam if it doesn't reduce by itself.

      When I first developed tinnitus with severe hyperacusis 23 years ago I wore white noise generators for 2 years. At the end of this period the tinnitus reduced to a very low level and the hyperacusis completely cured. The hyperacusis has remained this way. In 2008 I had a second noise trauma and had TRT for the 2nd time. I have written about this in my post: My Experience with tinnitus, which I will place below in the link as you might find it helpful.

      If you are happy with the way you are using your white noise generators and this is what your Audiologist advised then please continue. However, Professor Jastreboff, developer of TRT advises a different way white noise generators should be used, when treating tinnitus and hyperacusis. It was this method my Hearing Therapist advised me of in 1996. In 2008 and again in 2008 was told to me by a different Hearing Therapist.

      In the morning the generators should be placed on the ears and the white noise adjusted slightly lower than the tinnitus. The white noise mustn't cover up or mask the tinnitus. Once the the volume is set the generators should be left alone. It can be tempting to adjust (increase) the volume throughout the day, especially when outside as it can be difficult to hear them. I was advised not to do this. The reason being: The brain over time will habituate to the white noise and slowly push the tinnitus into the background making it less noticeable - habituation.

      If the white noise is continuously adjusted the brain cannot habituate to the white noise generators. It doesn't matter when out on the street and you might find it difficult to hear the WNG. just know they are doing their job. They will still treat the tinnitus and hyperacusis by desensitising the auditory system so it becomes more tolerant to sound.

      At night it is advisable to use a sound machine for "sound enrichment" by the bedside. Although some people with tinnitus choose to sleep in a quiet room, this is not such a good idea. If the brain hears quiet, it has the ability to increase its background activity at the same time increasing the tinnitus.

      All the best
      Michael
       
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    15. Cojackb
      Fine

      Cojackb Member Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Unknown
      Thanks @Michael Leigh - always happy to take on board suggestions, so thank you. I'll keep a physical note of this and re-adjust my WNGs to suit. I did occasionally suspect they might be too loud but you've confirmed so I'll crank them down a bit!

      Appreciated!
       
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    16. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      For newer members and those that have recently got tinnitus I highly agree with what has been said. The biggest obstacle for many is the obsessions with the noise. They will focus on it, no matter what level of intensity that tinnitus might have. Some type of low level/tranquil noise/enrichment can be quite helpful. The noise and masking should be much lower than the tinnitus. The brain just needs another noise to distract itself and a low sound/enrichment can be quite helpful.

      I have had tinnitus over 31 years and have no need for background noise to sleep at night time. I do make use of sound enrichment around my environment a few times a week, but at nights I sleep in silence. It all depends on the person, some need background noise, some don't. Find what works for you and apply it.

      Keep up the good job Michael, your posts are always golden!
       
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    17. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @fishbone

      Very well explained and I agree with you.

      I should stress, the purpose for using "sound enrichment" at night is not to assist or encourage sleep. It is all to do with the brain's activity while we sleep. Sound enrichment at night works in a similar way to a person that has hearing loss and develops tinnitus because of it. When such a person starts wearing the hearing aid, more sound from the outside environment is supplied to the brain and auditory system. Therefore, the brain no longer has to increase it's background activity to hear the sounds it would normally have difficulty hearing. It's background activity is therefore reduced and over time the tinnitus decreases too. Many people that have developed tinnitus due to hearing loss have found benefit when using a hearing aid/s.

      The brain and auditory system never switch off. For a person with tinnitus especially when intrusive, risks the tinnitus becoming louder or remaining problematic, by not using sound enrichment at night, due to the brain increasing its background activity - at the same time the tinnitus is raised too. This can make it appear loud during waking hours. By using low level sound enrichment at night, the brain no longer hears "silence" so the risk of increasing background activity is reduced and hence the tinnitus is not increased either.

      Saying all that some people with tinnitus, whether mild, moderate or intrusive, still prefer sleeping in a quiet room. Ultimately it is a personal choice as we are all different.

      Michael
       
    18. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      @msintros -- I began to think in terms of an anatomical cause when you related what happened to the bones in your face from the accident.

      I think it's very possible this "could" be the cause. Perhaps even more possible that it's a contributing factor.

      I don't know that there's any evidence, but it would seem likely to me.

      I myself sustained a significant head injury/whiplash when I was 15, and have been trying everything I can think since then to lessen a number of ongoing symptoms. One of the main things that helped was an atlas repositioning technique called AtlasPROfilax. The link will take you to a brief post I made on this technique, in which I relate how it shifted my entire facial structure.

      I've also done, and currently do many other things that help me in a number of ways. The list includes: Self-acupuncture; Gua Sha; regular Physical Therapy; Egoscue Techniques (for full body structural integrity); Nasal Specific; DMSO; and quite a lot more. It's a never ending processing of learning and experimenting for me. One major thing I accomplished is I've gone from from daily chronic debiliting head and neck aches (for decades), to having it be a relatively minor problem.

      Now that I have tinnitus, I'm redoubling my efforts to correct my anatomical issues, as I think they're at least a contributing factor in its severity. I've even learned how to do a sort of self-AtlasPROfilax, which I could describe for you in detail if you were interested. It mostly consists of doing some very deep massaging along the boney ridge directly beind the ears. This massage can loosen very tight ligaments and tendons which keep anatomical issues "locked up". When I first started doing this massaging (daily), I noticed a big shift in my neck, noticed myself walking taller, and even noticed a shift in the pectoral muscles on the front of my chest.​
       
    19. AUTHOR
      AUTHOR
      msintros

      msintros Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Unknown
      Interesting, I will definitely look into the AtlasProfilax. I do sometimes try to massage the bony areas that you mention, but I don't do it with enough consistency I think to be of major benefit. I think at the very least I will try to make that more of a routine and see if it helps. I've had a strong suspicion for a long time now that tension and anatomical abnormalities due to the accident have caused inflammation in the areas around my trigeminal nerve leading to the symptoms I experience. Thanks for your kind reply!
       
    20. AUTHOR
      AUTHOR
      msintros

      msintros Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Unknown
      Thanks for the testimonial. I think I have avoided looking into this so long because I thought the noise would be as annoying as my symptoms but it could be it will be worth it. I assume they are these easy enough to take in and out?
       
    21. Cojackb
      Fine

      Cojackb Member Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Unknown
      Yes - the ones I have sit behind the ear with a very discrete, transparent wire that goes into the ear.

      Starkey_X_large.jpg
       
    22. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      @msintros -- After I discovered that DMSO can dramatically decrease inflammation, I started regularly applying some topically on my neck and upper back area 2-3 years ago. It was a key piece in finally getting rid of the worst of my chronic daily headaches. DMSO is currently used in ER rooms to quickly bring down brain inflammation in cases of closed head injuries.

      Regarding the trigeminal nerve: It--like all the other cranial nerves--traverse via brainstem--through the upper most cervical vertebra, the atlas. If the atlas is out of alignment, those cranial nerves can become "crimped". That was the case for me, and immediately after getting this "atlas repositioning", my vagus nerve began to function much better. The vagus nerve is so important to many critical body functions.

      One of the self-acupuncture things I started doing recently is inserting three needles into the brainstem area. I've found it to be very relaxing, leaving me with a sense of my system being able to "reset" itself. I also noticed within just 3-4 days that my neck motion was signficantly better (first noticed it while I was driving). -- I feel like I"m only at the beginning of my self-help experiments.
       

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