Intrusive Tinnitus

Discussion in 'Support' started by Michael Leigh, Nov 26, 2015.

    1. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Intrusive Tinnitus

      I believe the majority of members at tinnitustalk have intrusive tinnitus, me included otherwise I don’t think we would be here. Although my tinnitus is intrusive its intensity is variable from: silent, mild, moderate and severe. I should mention that I have fully habituated. Habituating to tinnitus will be different for everyone, for it will depend on what’s causing it and a person’s approach to life and whether they have a negative or positive outlook. Please don’t be alarmed, this isn’t going to be another positivity post for I and others have said plenty on the subject.

      Some people have learned to manage their tinnitus quite well and visit TT to try and help others, for they know how debilitating this condition can be and the impact it can have on one’s life and those closest to them when it’s loud and intrusive. I believe some of the best advice on managing the condition can be gained from members at forums like tinnitustalk. I am therefore surprised when reading and answering some of the posts here, at the amount of people that don’t use sound enrichment at night and they have intrusive tinnitus.

      It is well known that the brain and auditory system never switches off, providing of course one hasn’t met their demise. Doctors often encourage those, close to a comatose patient to talk to them, as the sense of hearing is still active. If the brain hears silence when we are in deep sleep, it has the ability to increase it’s own background activity. In doing so it will also open up its auditory receptors or gateways and increase the tinnitus, thus making it louder and more intrusive during our waking hours. Tinnitus is generated in the part of the brain called the limbic system, which controls our emotions. The onset of tinnitus often brings with it fear and emotional instability, because that part of the brain focuses on the tinnitus and never wants to let it go.

      A sound machine placed by the bedside and set to play throughout the night until morning, is an ideal way of supplying the brain with sound enrichment. The brain’s auditory gateways will now tend to close, and over time the tinnitus is pushed further into the background making its perception less noticeable during waking hours. If a person has hyperacusis (sensitivity to sound) it will also be addressed, as sound enrichment will help to desensitise the auditory system.

      It is not uncommon for someone with hearing impairment to experience tinnitus. Once someone is fitted with a hearing aid/s the tinnitus will usually fade into the background and become less noticeable. This is because the brain no longer has to work so hard by turning up its internal gain (volume) to compensate for the frequencies in the outside world it cannot hear. Wearable white noise generators used as part of TRT (tinnitus retraining therapy) work in a similar way. Supplying the brain and auditory system with sound enrichment. Over time the tinnitus is pushed further into the background making it less noticeable. If hyperacuis is present the wngs will treat it.

      Many conditions can cause tinnitus but exposure to loud noise/sounds is the most common. Anyone with noise-induced tinnitus it’s advisable to use a sound machine that plays nature sounds by the bedside at night. Although some people use music it is not the best source, as it draws the brain’s attention. Low-level non-intrusive sounds have been known to work the best.

      For those whose tinnitus wasn’t caused by exposure to loud noise, I still think it’s a good idea to use a sound machine at night, in preference to sleeping in a quiet room. SM can also be attached to a pillow speaker for privacy providing a 3.5 mini out-put socket is fitted. Oasis sound machines are one of the best and most of their models are fitted with 3.5 socket. Anyone interested their website can be found on Google.

      Michael
       
      • Like Like x 2
    2. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      Michael,

      What is your opinion on wearing earplugs. When and where? What about daily sound exposure and it's positive or negative effects?
       
    3. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Hi Blujay. Earplugs are a good thing when used correctly, in noisy evironments. They shouldn't be used to surpress normal everyday sounds. Anyone with tinnitus needs to be more careful of exposure to loud noise. It's a matter of just being sensible. If sound levels start to become uncomfortable then move further away from it.
      Michael
       
    4. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      What do you consider noisy? Do you wear earplugs in cars, for example?
       
    5. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      No blue, I have never worn earplugs in a car. Noisy enviroments are: Bars or pubs where music might be played loud. Concerts, football games. The earplugs that I'd recommend wearing are noise reducing earplugs at these events. They don't totally block-out sound, they reduce it. If you are sensitive to sound then that isn't normal and you could have hyperacusis (sensitivity to sound) in that case it would be best to be seen by an ENT Dr to be examined.
       
      • Like Like x 1
    6. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      Michael,

      I've seen a couple of approaches to tinnitus that seem yet unstudied by science, and I'm wondering if you'd care to comment.

      I know of people who intended to "heal" their noise-induced tinnitus. On instinct, they wore earplugs for a year or more in "normal" surroundings, in order not to irritate their hearing (just as common sense would tell one to do with any other injured body part). When they finally removed the plugs for good, their T was almost non-existent. (Apparently, not everyone gets hyperacusis from wearing ear plugs.)

      At the other end of the spectrum, I know of people with tinnitus who exposed themselves "very gradually" to louder and louder sounds over a period of years. The intent was not to mask, but to turn down the volume of the brain. One person, by the end of that time, had his white noise machine turned all the way up at night. These people gradually got their central auditory gain turned down to such a great degree that they could no longer hear their tinnitus, even when in silence. This was not habituation; the tinnitus (along with other exterior sounds) kept reducing in volume until the tinnitus was simply no longer audible. They were willing to hear the entire world a little more quietly in exchange for not hearing the tinnitus. As they maintained normal lives, out in normal sounds, the effect was permanent, and they no longer needed night-time masking at all. (One person did turn on the white noise a couple of nights a week, to make sure the brain maintained its volume setting.)

      And then I know of one person who combined both the above methods: first healing the tinnitus with ear plugs, and then later driving down the gain with sound.

      These people had the patience of saints, but it worked for them.

      Comments?
       
      • Good Question Good Question x 1
    7. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Bluejay,
      Tinnitus is very complex. It comes in many forms and intensities and no two people experience it the same. A particular treatment might work for one person and do absolutely nothing for another.
      Using sound enrichment is a tried and tested treatment that has helped many people, but as I said everyone is different so it probably won't work for everyone.

      I once had very severe hypercusis and it was cured in two years using white noise generators as part of TRT. I was under the care of hospital and had regular counselling appointments with a Hearing Therapist who also had tinnitus - back then my tinnitus reduced to such a level I hardly heard it. Unfortunately, in 2008 my tinnitus increased due to noise exposure. I started TRT for the second time and wore white noise generators and had counselling with my Hearing Therapist; the treatment lasted two years. However, TRT the second time around wasn't as successful. It helped but my tinnitus never returned to what it was like before, although thankfully my hyperacusis didn't return. There is no certainty in how tinnitus will react to treatment because we are all different, we just have to hope for the best.
      Michael
       
    8. Bart
      Balanced

      Bart Member

      Location:
      Antwerp
      Tinnitus Since:
      05/06/2014
      @Michael Leigh

      Do you still use sound enrichment at night now that you are fully habituated ?
       
    9. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Hello Bart,
      I have had tinnitus for twenty years and habituated to tinnitus twice. My t got worse in 2008. Had TRT for two years but it didn't return to what it was like before. It can be: Silent, mild, moderate, and very severe. When it's very severe and this last for 2 to 3 days I have to take clonazapam 2x0.5 tablets. Believe me the noise is that intense it's imposible to habituate to that. My consultant told me I'm the second worsed tinnitus patient she's ever treated- I did ask her to be candid about my condition.

      However, she said: "I'll never give up on treating you". That's when she prescribed me the clonazapam. It's sometimes given to people with severe tinnitus. I know of it's addictive nature and don't take it often. My Dr and hearing therapist have said, they don't normally see patients with my type of tinnitus. Such large fluctuations in intensity. When my T is silent, mild or moderate I can carry on just fine. When it's severely intrusive that's another matter, I cope though. I have habituated and as I type my sound machine is playing in the background. I always use my sound machine at night even when my tinnitus is completely silent. I wear my white noise generators whenever I feel like it, sometimes when my tinnitus is silent.
      Michael
       
      • Like Like x 2
    10. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      Michael wrote:

      "I once had very severe hypercusis and it was cured in two years using white noise generators as part of TRT. I was under the care of hospital and had regular counselling appointments with a Hearing Therapist who also had tinnitus - back then my tinnitus reduced to such a level I hardly heard it."

      Michael,
      It sounds as though possibly you were hearing the tinnitus because your central gain was cranked up so high by the hyperacusis. And when that central hyperacusis volume was reduced by your sound therapy, the previously amplified tinnitus went down with it.

      This causes me to think that sound therapy based on reducing central gain could be beneficial--even for those who do not have hyperacusis. If it can be done without worsening the tinnitus...

      It also sounds as though your second bout is a new breed; you're now hearing tinnitus because of specific damage, and not because your central gain is cranked up by hyperacusis. And that's why the second therapy was less successful.

      However, I can still see hope there... Possibly the volume is cranked up only in the range of your tinnitus, but somehow driving down the central gain might still affect it positively. Or there may be some way to drive down the volume gain of the specific frequencies of the tinnitus?
       
    11. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Bluejay,
      Thanks for your advice and you could well be right. I have improved sine 2008 and my T is now managable. I don't want to tempt fate and try anything. I know what my tinnitus can be like when it's very, very severe and I don't ever want to visit that place again.
      All the best
      Michael
       
    12. glynis
      Feminine

      glynis Member Benefactor Hall of Fame Ambassador Team Awareness

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I wish mine would settle down a bit but it never does.
      Thank god for the NHS and my digital hearing aids.....lots of love glynis
       
      • Agree Agree x 1
    13. Blujay

      Blujay Member

      Tinnitus Since:
      10/1900
      I certainly understand that.

      I'm bringing it up because it's so often repeated that "tinnitus happens when the brain turns up the gain on damaged hair cells." Yet there's little talk on possibly turning down that gain. I think some sufferers have stumbled onto their own method and gotten lucky.

      But the story about your tinnitus reducing along with your hyperacusis is significant, I believe. I have heard this before. And since many people with ordinary tinnitus report being sound-sensitive in the range of their tinnitus, could it be that they are actually experiencing a form of range-specific hyperacusis? And if so, could it be specifically treated as such?

      You mention that your T has improved since 2008. Can you attribute this to anything specific?

      Thanks.
       
    14. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Blujay,I have continued using my white noise gerators since 2010 when trt ended. I can't put the improvements down to anything specific except keeping a positive outlook on life even in the down times. When my T was at it's worse I was unable to read a book for two years. It was a hard long road to get back to where I am and I'm statisfied with that. I'm thankful to my: GP, ENT consultant and hearing therapist for never giving up on me. Michael
       
      • Hug Hug x 1
    15. Matthew Garrett

      Matthew Garrett Member

      Location:
      Chesapeake, Virginia
      Tinnitus Since:
      Summer 1997
      Cause of Tinnitus:
      Kevlar McMillan Rifle Stock...
      Hello All,

      My name is Matthew and I have had intrusive tinnitus since the Summer of 1997. I am 42 years old and I have been through Tinnitus Retraining Therapy once, in a slightly modified form, as originated by Dr. Powell Jastreboff at the The University of Maryland. My Doctor at the time, Dr. Richard Prass added Klonipin and Flexeril as I had and have tremendous neck stiffness that releases in an extremely loud auditory pop. Heard by EVERYONE...;-).

      Michael,
      We are all in this miserable bit together so I hope you will not take exception if I diverge with a few of your points. It may give you, me, and everyone else listening something to think about... I hope.

      I am a shooter and everyone goes "ahhhh" and assumes I did not wear hearing protection or was cavalier with my hearing. NOTHING could be further from the truth. I have sensitive hearing, hyperacusis, and always had to cover both ears in the balcony of the Symphony, and HAVE on one occaision ran out holding my hears as a child.

      Actually the damage came from using a very "stiff rifle stock" that conducting vibration(aka sound)just like a tuning fork. The stock was made by McMillan Fiberglass Stocks, on behalf of Remington Arms Custom Shop, when they were owned by Dupont. Dupont owned kevlar and wanted kevlar used in as many places as possible. McMillan was pushed to used said kevlar and my first rifle, a 40XB-KS(Kevlar Stock).22-250 Varmint Rifle, turned out to nearly ruin my life. What happened, and this took years, and a sharp audiologist by the name of Howard Gutnick to discern was that the fall of the firing pin, propelled by the firing pin spring, lead to a transfer of vibration right into the stock, and it traveled right into the butt stock, which had been left hollow in order to make weight for benchrest, and ultimately right into my jawbone and then into my inner ear. This SHOULD have been clear to me as the rifle would "ring" me even when "dry firing" or practicing trigger control while looking for any movement of the scope reticle. It mattered not whether there was a cartridge in the rifle or not. It was ALL about the vibration. Think tuning fork...

      I have used various types of sound enrichment from the beginning, however, they alone are not all sufficient. I currently use a Swiss IQ Air Hyper HEPA filter that sounds like a Eurocoptor outside of the window and yet if I turn over and cup my ear on the pillow and seal my ear off the outside noise IT WILL WAKE ME UP WITHOUT FAIL.

      My hearing tests continue to show me in the "normal" range... Clonazepam is a life saver, however, it no longer is the miracle it was in the beginning. We had to go through ALL of the normal sleep aids until we got to fairly powerful anti-psychotic called Queitiapine/Seroquel which I take 400mg before bed along with 2 x 2mg of Klonipin(yes 4 mg). They have shown to have a real cumulative affect on my short term memory. I was in law school when this happened and my mind was quite accute. Now I can be brought off task by a mere utterance... That said I will take being a touch daft and sleeping than on point and on the verge of going nuts. I simply cannot handle it.. It is THAT bad.

      At my best I have NEVER not been able to hear LOUD AND CLEAR yet I found the TRT Therapy to be of great help. I have not known silence since 1997. I remember MEN IN BLACK as the last Movie I went to Theatre to watch where I could hear perfectly and not hear this horrid sound ABOVE the already high sound effects and dialogue. I am looking to start TRT again as this is getting almost unbearable even with essentially be "knocked out" in order to sleep. The problems with this approach is that Doctor's retire, new Doctors do NOT understand, and they try to take you off of Clonazepam because they can only perceive of the ringing in the theorhetical. It is very distressing...

      When I find a Doctor who understands he is older and more likely to retire in short order... What are we left to do?

      Thank you for giving me a place to ask such a question. I know I am not alone...

      Regards, Matt Garrett
      Chesapeake, Virginia
      United States of America
      Direct Ancestor left London, St. Vast Parish, 1635. Hoping to come back for a visit some day. Would dearly love a quiet visit...;-).
       
    16. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Hi @Matthew Garrett
      Thank you for writing such an interesting account of your experience with tinnitus and feel it will be helpful to many. However, I'm sorry that your journey wasn't a more pleasant one. I was also prescribed clonazepam but advised by my GP and ENT doctor to take it only when my tinnitus is very severe. If taken on a regular basis the body quickly habituates to it and the drug isn't as effective at lowering the tinnitus. This means a higher dosage is required to get relief and that's when dependency can set in. This medication can also have unpleasant side effects. I take clonazepam occasionally now and haven't increased the dose which is 2x 0.5 tablets for one day or two and that's usually enough to reduce the intensity of the tinnitus to more manageable levels or for it to be completely silent. My tinnitus ranges from: silent, mild, moderate and severe. It no longer reaches extreme severe levels that used to last for many days.

      I am a believer in TRT having had it twice with good results and hope you have the same 2nd time around. Please remember, even when wearing ear protection, if external sound is loud enough it can still reach the inner ear via bone conduction and irritate the cochlea. Please read this article. https://www.britannica.com/science/ear/Transmission-of-sound-by-bone-conduction. I believe most ENT doctors try to help their tinnitus patients. As you have rightly said many of them do not understand tinnitus and there is good reason for this. Please read the post below.

      All the best.
      Michael

      Why is my ENT Doctor useless?

      Over the years I have read many posts at tinnitus forums. Therefore, it is of no surprise to see familiar questions and comments recurring especially by those that are new to this condition. Understandably, some people are in distress and are seeking help. They want reassurance that all will be well. Many want to hear the right answers to their questions or at least their version of it because anything less doesn’t compute. Will it go away? How long does it take to habituate? Will I get my life back? When will a cure be found? The list goes on.

      In addition to this, I often hear people say that their ENT doctor doesn’t understand their tinnitus or what they are going through. After all, they are supposed to be the experts right? Sometimes it can leave a person feeling desperate and at a loss, not knowing what to do or where to go for help. This realisation, comes after having various tests have been done on their auditory system only to be told by their doctor, that no abnormalities where found. The advice given is to leave things as they are for now and see what happens.

      Some people don’t believe in the wait and see approach and have even said their ENT doctor is completely useless when no help has been offered. Whilst everyone is entitled to an opinion, I don’t agree with this statement. However, I do understand how one can come to this conclusion, especially when the bedside manner of some doctors leaves a lot to be desired. This needs to improve if a patient is to feel proper care and consideration is being afforded to them, because we know that tinnitus can be very debilitating when severe and can affect one’s emotions considerably.

      The ear is a very delicate organ and if there is no underlying medical condition causing the tinnitus, such as: pain in the ears, deafness and dizziness or balance problems. The advice to wait and see what happens is usually correct. Many people learn to habituate within the first six months sometimes a little longer and it has been known go completely away. Too early an intervention could make matters worse.

      In the early stages of tinnitus, it is not unusual to experience stress, anxiety and even some depression. These symptoms usually improve with time. Having a word with your GP about this can be beneficial, as medication can be prescribed to help you cope and they don’t have to be taken long term. I am a believer in using sound enrichment; during the day and especially at night. Whether this is via a dedicated sound machine or playing low-level non-intrusive music by the bedside. The volume level set to just below the tinnitus.

      ENT doctors are important health professionals and I have a lot of respect for their skill and expertise. They know all about the anatomy of the ear and are able to treat it medically or surgically. However, in my opinion they are not tinnitus experts, which I believe calls for another set of skills that the majority of them don’t have. This is the ability to know, understand and empathize, with what a tinnitus patient is going through when the condition is loud and intrusive.

      My consultant is an Audiovestibular physician whom I have a lot of respect for. She once told me that I know more about tinnitus than her. She explained because never having experienced it. For this reason, when there is no underlying medical condition causing the tinnitus a person is sometimes referred to a Hearing Therapist or Audiologist trained in tinnitus management.

      This can involve counselling, wearing devices such as hearing aids or white noise generators. Treatments such as TRT, CBT and Mindfulness and relaxation therapy can also be helpful. These health professionals help their patients by showing them a way forward and demystifying a lot of the negativity that surrounds this condition. Not surprisingly, this level of understanding and empathy doesn’t always come from training alone, for some of these people also have tinnitus. Over the years I have met quite a few Hearing Therapists and Audiologists at tinnitus Internet forums helping people. At some point they have relayed to me that they have tinnitus or were born with it as my hearing therapist was.

      Michael
       
    17. Bill Bauer
      No Mood

      Bill Bauer Member

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma (sonic toothbrush touched ear...)
      You could get your doctor to write a letter to your future doctors explaining your treatment to them.

      Something similar must have happened when a sonic toothbrush touched the opening of my ear canal for a fraction of a second...
       
      • Like Like x 1
    18. TuneOut

      TuneOut Member

      Location:
      El Dorado Hills, CA
      Tinnitus Since:
      1994
      Cause of Tinnitus:
      Rock Concert
      Perhaps it might have returned to its previous level if you had rested your ears instead of continuously bombarding them with "normal" sounds.
       
    19. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I doubt it. Being around normal everyday isn't bombarding them.
       
    20. TuneOut

      TuneOut Member

      Location:
      El Dorado Hills, CA
      Tinnitus Since:
      1994
      Cause of Tinnitus:
      Rock Concert
      It's mostly the prolonged exposure that I question. Including exposing one's ears to sound throughout the night. I still have the feeling that after trauma, perhaps many months after, the ears are in a vulnerable state and that reducing exposure to both "loud" or prolonged sound may give them a better chance to heal over time, at least to some extent. In the same way that a person does not go back to running a marathon right after a heart attack.
       
      • Agree Agree x 1
    21. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Sorry I don't quite understand what you mean. I used to have very severe tinnitus. So bad when people spoke to me my ears hurt. That was 20 years ago. My hyperacusis was cured in 2 years, wearing white noise generators for 10hrs a day and using sound enrichment at night. My tinnitus reduced to a very low level. However, it increased in 2008 because I had a 2nd noise trauma. My hyperacusis has not returned.
      All the best
      Michael
       

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