My Tinnitus Is Not Better After Using Pink Noise BTE Sound Generators

Discussion in 'Support' started by Marcuso22, Feb 28, 2021.

    1. Marcuso22

      Marcuso22 Member

      Location:
      Canada
      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Loud prolonged exposure to alarm system
      I have been using pink noise with two different programs on my BTE Sound Generators for two months now. I wear them most days for 10 hours but when I take them off at night I can hear my tinnitus just screaming loud in bed. My audiologist has reset the volume on the pink noise programs on three different occasions. We started at higher volume but I complained that it was too loud. The volume for my right ear was set higher than my left ear because my right ear tinnitus is louder and far more reactive to sounds. I explained to my audiologist that it doesn't matter how much you raise the volume on right side my tonal sounds compete and will simply go above it. He has done his best to make sure the sound is at mixing point where I can still here the high pitched frequency tonal sounds but of course he has to rely completely on my input for that due it being subjective tinnitus. With my left ear it is hard to hear the tinnitus with the pink noise Sound Generators but I can definitely hear it in my right reactive ear especially when it reacts to external sounds.

      I used the analogy that my reactive tinnitus in my right ear is like a beach ball that will always float & bounce above the water i.e. pink noise volume level. I told him that no matter how much water you add to the pool the ball will always be sitting on top of it trying to chase it. He agreed. But this makes things very difficult because it seems he's not certain what volume to use on me with the pink noise. He finally did LDL test on me at my request after many visits where he was apprehensive to do it. It showed I have only moderate to very little percentage of low tolerance sound level depending on who's researchers definition you use. He said I don't have hyperacusis but I have reactive tinnitus & will from now on treat me like I have hyperacusis and lower the pink noise sounds & put them at same level for both my ears. I feel now he is uncertain how to treat my case & is simply experimenting to get my feedback. I don't know if I should continue with this treatment which he say's he is following TRT protocols even though he doesn't have TRT training. He said the plan is to slowly lower the pink noise volume over time but in contradiction said he will treat me like I have hyperacusis which means the pink noise volume begins at very low level and then goes up slowly in volume.

      I also notice that when I'm in bed during the day on day's I don't feel well and am not wearing my BTE Sound Generators for most of the day my ears get more and more louder and painful. This also worries me. When I'm in bed and not listening to any sound it's like my ears are starving to hear the pink noise it has become accustomed to. I don't like to sleep with any sounds to be honest so I haven't. But my sleeping is getting worse and worse and if something wakes me up it's impossible for me to get back to sleep. My audiologist insists I listen to external ambient sounds and do meditative exercises but I find it difficult to get use to that.

      I also notice my ears are more hypersensitive since wearing the Sound Generators. My ears without the BTE Sound Generators bother me more when i hear elevator fans, lights, refrigerator, & car noises. They seem much louder to me than I recall before wearing the BTE Sound Generators I don't know if this is a coincidence due to it only being a few months since I developed this severe form of tinnitus or a direct result of the Sound Generators.

      Any feedback on here would be appreciated.
       
      • Hug Hug x 2
    2. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      HI Marcuso22,

      I am sorry to know of the difficulties that you are going through.

      I have had TRT twice following the TRT protocol and also have the TRT book written by Professor Jastreboff. Your Audiologist/Therapist may believe he is following the TRT protocol but I am advising you he is not and this is one of the reasons, I believe your tinnitus is giving you so much discomfort. Some Audiologists advise patients to set the white noise at the mixing point, but unfortunately this often causing irritates the tinnitus and hyperacusis if it is present. I have corresponded with people have also have this difficulty and when they follow my advice, the way I was taught, they often have no more problems.

      The white noise should be set slightly below the tinnitus at all times. You should also be having regular counselling with your Audiologist/Therapist. I don't normally cut and paste from previous posts that I have written. However, for convenience please read the text below that I have written on TRT.

      All the best
      Michael

      Some Audiologists advise patients to wear the WNGs straight off for 6 to 8 hours and this often causes pain and can increase the tinnitus and hyperacusis. Some advise patients to treat the hyperacusis first, by gradually increasing the volume of the WNGs. This method has also caused some people problems.

      Once I was able to wear the WNGs for 8 hours a day, I was then advised to keep the volume slightly below the tinnitus at all times. I'd put them on in the morning and leave them alone. The brain habituates to the sound of the white noise generators and over time, pushes the tinnitus further into the background making it less noticeable. At the same time the hyperacusis is treated. Some people put the WNGs on in the morning at home, once out on the street they become more difficult to hear. There is a tendency to turn up the volume of the WNGs so they can be heard, this is the wrong thing to do. If the volume of the white noise generators is constantly adjusted, it makes it more difficult for the brain to habituate to the white noise. Rule of thumb: Put them on in the morning set the volume slightly below the tinnitus and leave them alone. When retiring to bed at night, they should be removed and a sound machine used by the bedside for sound enrichment. Set at a level slightly below the tinnitus and playing continuously through the night until morning.

      If a patient is fitted with one white noise generator and no regular counselling is given it is not TRT. If two white noise generators are issued without regular counselling, it is not TRT. If a patient has counselling and white noise generators haven't been issued, this is not TRT. Proper TRT is being fitted with two white noise generators and having regular counselling with a Hearing Therapist/Audiologist for up to two years.

      In addition to this a patient has to help themselves by reinforcing positive thinking and this takes time. Turning up at counselling sessions listening to a Therapist talk for 1hr, as in my case is not enough. A person has to make a conscious effort to participate in things they liked to do before the tinnitus onset. TRT: Tinnitus Retraining Therapy, is not a cure for tinnitus. It is exactly what it implies: it is a retraining of the mind to help a person learn to accept the tinnitus and not be afraid of it.

      What Is TRT and When Should It Be Started? | Tinnitus Talk Support Forum
       
      • Helpful Helpful x 1
    3. Chadilac

      Chadilac Member

      Tinnitus Since:
      June 2020
      Cause of Tinnitus:
      Noise induced
      It could be that your tinnitus is changing. After my initial onset, around 2-3 months in, I developed reactive tinnitus with 2 more tones which lasted for about a month or two before it went back to a single tone and became non-reactive.
       
      • Helpful Helpful x 1
    4. AUTHOR
      AUTHOR
      Marcuso22

      Marcuso22 Member

      Location:
      Canada
      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Loud prolonged exposure to alarm system
      Thanks @Michael Leigh. The difficulty is that I have various types of sounds I hear & they are dynamic throughout the day. There's the non tonal sounds like letting out the air of a large tire which can get louder & sound like jet turbine & then there's the tonal shrieking high pitched tonal sounds which are above the other sounds.

      My audiologist at our first meeting had asked me which noise causes the most discomfort. I told him the tonal sounds. So he sets the level of the pink noise in my sound generators to point where it is approximately just below the high tonal sounds I hear. But he of course has to rely on me to know where that level is. This is how I am being treated with the pink noise BTE sound generators. If that's TRT's way of doing it or not I have no idea. I think if he were to set the volume just below both my tonal & non tonal sounds I hear the decibel level of the pink noise will be very low and perhaps maybe of no use. He tells me we are already at a very low decibel level with my pink noise.

      As far as counseling he believes I should take Dr. Jennifer Gans course online & has recommended I read the book Full Catastrophe Living by Jon Kabat Zinn. He recommended the app ReSound as well. He want's me to see a CBT which I haven't seen yet but have an appointment next month with in my city.

      ***I forgot to mention my Oticon Rae sound generators/hearing aids have ability to go up or down in volume. The Audiologist has control of how many levels I can go up or down & by how much change in volume each level has in decibels. He also has them set for two different pink noise sound patterns (1. is like a water wave sound 2. is a static sound) but my sound generators can be programmed for 4 different sound patterns. He has left it up to me to adjust the volume up or down during the day. I can go 5 steps in decibels above his setting or down 5 steps. I tend to put the volume up when I am outside in noisy places or put the volume down below the mid range he had set it at (I believe that's the point just below my high tonal sound) when I am in my bedroom watching T.V.
       
    5. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      Hi @Marcuso22,

      Thanks for the additional information. Please read my post carefully which describes the correct way TRT should be practiced and click on the links: What is TRT and when should it be started.

      I use Oticon BTE white noise generators which also have pink noise select. You should not keep adjusting the volume throughout of the white noise generators throughout the day, otherwise, your brain will have more difficulty habituating to it. Set the volume at home slightly below the tinnitus and leave the volume control alone. My advice s not to turn it up when out on the street. Please read my post where I explain the reasons.

      You need one to one counselling and preferably with a therapist that has tinnitus.

      Please go to my started threads and PRINT the following articles, to help reinforce positive thinking and refer to them often: Tinnitus and the Negative Mindset. Acquiring a Positive Mindset. The Habituation Process. Hyperacusis, As I See It. From Darkness to Light.

      Michael
       
    6. AUTHOR
      AUTHOR
      Marcuso22

      Marcuso22 Member

      Location:
      Canada
      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Loud prolonged exposure to alarm system
      Q. When you received TRT, did you only use one type of sound pattern for the whole time under treatment? i.e. static pink noise.

      Q. Are you recommending that the pink noise I listen to should be below both my tonal and non tonal tinnitus perception levels? If that's the case, then what is proper way to wean off the pink noise sound generators? Did you under TRT not have a weaning process to stop using your Oticon sound generators?

      I wasn't told by my audiologist that my brain has to habituate to one specific pink noise sound. I have been using both pink noise sound patterns I have programmed, but mostly the static sound.
       
    7. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      On both occasions I had TRT my sound generators were fitted with only white noise. My current generators are fitted with white and pink noise which I can select. There is not a lot of difference between the two. Pink noise sounds slightly smoother. My hearing has been regularly tested and is above normal.
      Pink or white noise through wearable sound generators should be set below the tinnitus. In other words, the tinnitus should be heard slightly above the sound and should not be masked or covered up. I know some Audiologists suggest pink/white noise can be set at the mixing point. This is where the tinnitus and pink/white noise are blended together. However, this often causes irritation and makes the tinnitus and hyperacusis (if present) louder.
      I was told many years ago by my Hearing Therapist and read the same in an article online, that the brain habituates to the Pink/white noise from the wearable sound generators. Over time it slowly pushes the tinnitus further into the background and habituation occurs. This is the reason the volume of sound generators should be set in the morning and left alone. If the volume is constantly adjusted throughout the day it makes habituation more difficult.

      Michael
       
    8. AUTHOR
      AUTHOR
      Marcuso22

      Marcuso22 Member

      Location:
      Canada
      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Loud prolonged exposure to alarm system
      Thanks @Michael Leigh.

      If you don't mind could you be a little more specific.

      I'm still not sure if by 'tinnitus' you include both tonal and non tonal sounds. Non-tonal sounds are difficult to hear compared to tonal high pitched sounds except when in silent room like bedroom when laying down in bed. So it would be difficult for my audiologist to set the volume for the non tonal sounds i hear. Also both my tonal and non tonal sounds fluctuate in volume. They are not static throughout the day. My ears are reactive especially my right ear.

      I wonder if TRT protocol & treatment has changed quite a bit since you first had TRT way back 15-20 years ago?

      Did you have static or dynamic wave pattern White Noise which you listened to all day?

      You mention the volume of the sound generators should be set in the morning and left alone. Did you set them each day at same volume or did you or your audiologist at some point during your two year treatment change the volume for a specific time period? If the volume was changed for specific time period how many times did your audiologist reset the sound generators until you completed the TRT program?
       
    9. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      @Marcuso22

      I began TRT in late 1996 and it lasted two years. The second treatment started in 2008 to 2010. The basic TRT protocol hasn't changed. It requires the wearing of two white noise generators with regular counselling. Once a person is under the care of an Audiologist, I don't normally get too involved unless a person requests help because they are experiencing difficulties. Tinnitus and hyperacusis are complex and each person is different. The advice I have given you is based on my experience with TRT.

      Some people have informed me their Audiologist advised treating hyperacusis first, by slowly increasing the volume of the white noise generators to desensitize the auditory system. Although this might work for some people those that have contacted me find their hyperacusis and tinnitus increased. When I advised them the way I was taught to set the volume of the sound generators below the tinnitus, their symptoms improve and they are able to carry on with the therapy.

      It reads on your Avatar that you have had tinnitus for 4 months? If this is correct you are still in the very early stages. If I understand correctly you started TRT two months ago and been wearing sound generators with pink noise for the same duration? In my opinion Marcuso, you have started TRT too soon. I have given my reasons for this in my article in the link I have given you: What Is TRT and When Should It Be Started? I recommend TRT should be started around 6 months after a person has developed tinnitus. Please read the post. As I have said it's just my opinion.

      I don't think I can help you further as there's only so much I can convey in a forum. Therefore, talk to your Audiologist about the difficulties you are experiencing and hopefully, they can be resolved and treatment can continue. Once this is achieved my advice is to keep away from tinnitus forums. It is important to bring positivity into your life by engaging in things you like to do. This is best done by keeping away from tinnitus forums, once a person has started treatment.

      Take care
      Michael
       
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