Tinnitus: There’s a Facebook Group for that!

TINNITUS

Who can pronounce tinnitus correctly?  There are two different pronunciations.  Both are correct.  

  • ti-NIGHT-us : typically used by the population.  We hear this pronunciation the most in Colorado.  
  • TINN-a-tus : typically used by clinicians and researchers

At least 50 million American’s experience tinnitus, and over 390 million worldwide

Tinnitus can be defined as hearing sound in the ears or head when there is no external sound. The sound is frequently described as ringing, buzzing, hissing, whistling, humming, roaring, screeching, thumping, ticking, clicking, and even the sound of an old typewriter. With all the information that is out there about tinnitus, there is still so little that we know about it.

Unfortunately, there is no cure. The treatment available is very subjective, limited in its scope, and can be expensive. Because there is no known cause or cure, the attitude towards tinnitus is usually very negative and the effect it has on the quality of life for many people can be ravaging. There are treatments that work and give relief to those who have tinnitus.

There is a Facebook group called “Tinnitus Sufferers”. They support each other, vent, complain, cheer, and strive to find a way to cope with their maddening tinnitus. I posted the following questions on their site:

What do you think caused the onset of your tinnitus? 

What treatment has worked or partially worked to lower the tone, and cope with the tinnitus?

Their responses are below and make for a great discussion. There were many variations of all the answers. I did not come across anyone who responded positive towards any widely advertised supplements. Most indicated a waste of money purchasing a special formula, herbal concoction, pills, drugs that pop-up on our social media pages, or in our email boxes. If it is too good to be true it probably is.

If a cure or miracle treatment are found it will be international news.   Tinnitus affects millions of people worldwide.  You can read about hearing loss and tinnitus statistics Hearing Health Foundation by clicking here.

Read on for the Tinnitus Sufferers groups answers to the questions. ‍

What do you think caused the onset of your tinnitus?

Top answers:

  • Noise induced.
  • Hearing Loss
  • Ear infection
  • Stress related
  • Drugs/medication
  • Accident/Fall/Abuse
  • TMJ
  • Sinus Infection /Flu  

Honorable Mentions:

  • Pressure Change in ear
  • Covid19/Vaccination  
  • Chemo
  • Meniere’s Disease
  • Diabetes 
  • EarWax
  • Dental work
  • Abuse (as a child)
  • Depression
  • Aspirin 

What treatment has worked or partially worked to lower the tone, and cope with the tinnitus.

  • Hearing aids with or without maskers 
  • Nothing works
  • Diet/Exercise
  • Sound Therapy (TV, Music, White Noise, Fan Noise, Noise Machines, Nature)  
  • Better Sleep
  • Stress management/Changing state of mind
  • Noise Prevention/Hearing Protection

Honorable Mentions:

  • Vitamins/Drugs
  • Acupuncture
  • Lower Carbs
  • Meditation
  • Listening to podcasts
  • Quit smoking
  • Psychologist/Audiologist
  • CBD
  • Keeping busy

Why finding a cure is difficult: We have more questions than answers!

Why do some people develop tinnitus and others do not? Why doesn’t everyone develop tinnitus from noise, or drugs? These are high risk factors leading to the onset of tinnitus, but not everyone develops ringing from noise exposure or drugs. Why doesn’t everyone who has hearing loss have tinnitus? Why do people with normal hearing have tinnitus?

The highest risk factors listed for the onset of tinnitus does not occur in everyone. We see people every day in our clinic for hearing loss. Conductive losses, and sensorineural losses. Not everyone has tinnitus. My mother and I have the same genetic loss. She does not have ringing, but I do. I went to a lot of concerts growing up and subjected myself to a lot more noise than she ever experienced. I also had intermittent ringing that would come and go before I went to my first concert. The concerts most likely are the trigger that aggravated my tinnitus to the high level, and constant ringing I currently hear today.

What might tinnitus sound like? Click here to listen to the sounds of tinnitus!   

There are many different theories as why tinnitus exists. One popular theory proposes “the brain is filling in sound where it is missing sound”, but how to account for those who have tinnitus and normal hearing. It is highly suspected that there are other areas along our auditory pathway that might be responsible for tinnitus. We currently cannot measure this objectively. It is all based on subjective and descriptive views of people who experience tinnitus. We cannot objectively detect, hear or measure subjective tinnitus with any equipment currently available.

How can we provide treatment for something if we do not know where or what to treat? What part of the ear or auditory pathway do we treat? Is this internal noise in the ears, or in our head? We cannot see it on the MRI, and we heavily rely on the patient’s perception.

With all that said above, there are treatments that work better than others. Hearing aids are the number one treatment that works best with a high percentage of people receiving full, or partial relief from their tinnitus when their hearing aids are in their ears. Sound machines, white noise, music, and television provide excellent relief of the daily ringing in our ears or head. The treatments above clue us in to let us know that bringing in sound works to decrease the sound in our ears or head.

The treatments above work for many people. We must be persistent and try different things. Some things will not work for every lifestyle, or person. As the saying goes ‘different strokes for different folks.’

The most important area holding back tinnitus research is funding.  There is not enough funding to find a cure for tinnitus.  Let’s assume that the pandemic put tinnitus research on hold for the year, but hopefully will resume.   Frontiers in Neuroscience posted an excellent article before the pandemic titled “Why is There No Cure for Tinnitus” It is exceptionally long, but excellent article on information pertaining to this very reason. You can read that here.

Lastly, tinnitus onset and successful treatments varies in many ways. I did not include every tinnitus onset that was mentioned, or every treatment. There were so many mentioned. The only conclusive agreement I did get is that we long for a cure, and it is frustrating to those that have it.

For tinnitus relief

Try the above-mentioned tinnitus treatments that worked for many people.  Be consistent and persistent!  There are lots of different mindfulness programs on the Tinnitus Apps Resources Page that might be helpful, and many are free!  

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