Is This Really It? Is There More to Tinnitus Than Just Sitting Around in Pain for Decades to Come?

I have been reading on this forum for many years, and have been commenting a lot lately as my own condition has deteriorated substantially over the past three months. I have been speculating on the cause, but can't pinpoint anything for sure. What really scares me is how loud it has become. I compare it to things in the house like the refrigerator which used to mask it pretty well. Now I have a hard time hearing the refrigerator. I know trying to associate the loudness with a dB value is not easy to do and may not be that meaningful, but the audiologist said it's over 70 dB. When I try it at home, I have to get closer to 85 dB before I drown it out with similar frequency sounds. Maybe very inaccurate, but it scares the hell out of me and makes me think I have the loudest tinnitus around. I would say a 9 of 10. I thought my tinnitus several months ago was very manageable, but not so much today.

From all those I have read so much from, @JohnAdams, @Bill Bauer, @Michael Leigh, @Jazzer, @Ed209, @fishbone, @OnceUponaTime, or anyone who wants to chime in, I would love to hear how your tinnitus is and is there more to this than just sitting around in pain for decades to come? Thank you for all of your time.

 

My tinnitus has a controllable, manageable character whiles others do not. Absolutely take your health and you future into you own hands and try things other people have tried. One this is don't let anyone ruin your optimism about reducing it, either through diet, supplementation, or emerging technology.

 

Follow the research as well. The Lenire and Michigan threads are very informative and can give quite some hope, which I think is the most important factor in successfully dealing with tinnitus until a definite cure is found.

 

Hi Mark
Firstly, I am so sorry to hear of your predicament, so similar of course to that of very many of us.
The awareness video:
“Dave’s Tinnitus Story”
I made one year ago is still relevant to my own situation and volume.

I am a realist.
We know that there is currently no effective treatment to reduce the noise - and no sign of a cure as yet.
We do have drug treatments for various brain maladies: headaches, migraines, nausea, Parkinson’s, etc.... and a tablet would be the ideal answer of course.
But still no sign of that as yet.

I have reluctantly come to believe that we have to somehow come to terms with it, and learn better coping methods, and tolerance.

My lovely wife is an ex hypnotherapist, and incidentally, a full-time angel. xx
She recorded a 25 minute hypnosis tape for me which I play to myself from my iPhone most mornings if I wake too early.
Encouraging thoughts and also something to listen to other than noise.

On getting up each morning, I lie in a hot bath for 30 minutes, when I obviously hear my sounds, but without concentrating on them.
I switch my attention to my breathing.
I make no conscious effort to breath, having asked my tummy (diaphragm) to take over my breathing for me.
I simply wait for my diaphragm to instigate the shallow breaths that it needs.
From then on I am simply a witness to my breathing.
My aim is to hear my sounds without making an emotional response.
I usually relax quite deeply, and sometimes drift off to sleep.
Either way it seems to benefit me.

Somewhere on this site I have made some meditational suggestions with more detail.
I’ll try to find them for you.

It is very important that you do not ‘teeth grind’ as that plays havoc with deep relaxation.
You need to become a ‘soft mouth - jaw hanger.’
More later

Dave x
Jazzer

 

How to stop teeth grinding. (Bruxism.)

Bruxism results from stress held in the mouth.
It is a fighting response to tension and anxiety.
It feeds both of these aspects.
Unfortunately, I have to tell you that relaxation of mind and body is not possible with that response.
So you have to address this sooner or later.

It is relatively easy to correct this problem, however.
Given that we have Tinnitus, relaxation and meditation are still possible.


———————————————


** How to approach deep relaxation.

Sit quietly in your chair,
Assume the demeanour of a baby.
With your lips closed, allow your jaw to hang comfortably loose, your teeth apart.
Allow the inside of your mouth to relax and go quite quite soft.
Allow your throat to soften.
Become aware that your tongue is now floating in water.
Just continue with your gentle breathing


*(As a habit for life, try to become aware of where your tongue is - it should always be floating gently in water, never pushed up against the roof of your mouth.

Teeth should close only when eating!)

 

My jaw is always tense. Thus loud ringing keeps it so. It's so very hard to relax but I will try this to see if it helps.

 

Thank you so much for taking the time. This really means a lot to me. Interesting that you suggest this as I have always clenched my jaw and have worn a mouth guard for decades at night to save my teeth. I have been making a conscious effort to not, but it’s tough. I will try these steps for some relief. Jazzer, I too am a realist, and don't expect medical breakthroughs. Like you, I have a wonderful wife who is a major support for me. She will do anything for me. On the onset, she helped me leave my dream position in Washington, DC and transition into the private sector. I know it is getting very taxing on her to see me in such pain over the years, especially recently. I thought working has been my saving grace to keep my mind off of it. But after many decades of building my career, it may be time for me to end as focus is becoming excessively challenging. Once again, I appreciate more than anyone can imagine the time you and others put into helping us broken souls on this site.

 

Also, most of the bruixism and grinding happens during sleep.

 

Mine is really loud too. I hear it over the tv and fridge. I hear it outside. Multiple tones and high pitched loud volume ringing. 9/10 or 10/10. I scoff at Jazzer's relaxation "advice." How does one relax with it so severe?

I really think tinnitus needs to be "divided" between mild/moderate and severe. It is really annoying to read posts about research treatments etc. It's bullshit. Like other health problems with no progress, it's even more so.

 

Hi.

Honestly, in regards to your question, I have no idea how people can deal with this condition for years and years, let alone ‘decades’. This question has been haunting me for 8 months now. I believe people just reluctantly chose to continue suffering because of the people around them and knowing that the only way out takes enormous courage and it’s obviously not something anyone really wants. I suspect that there is also many people that continue living in the hopes that there may someday be real help coming our way.

 

It's easy to think there is a lot of research going on but no progress but, if you look, there are a lot of diseases where incredible advances are being made in recent years: They have cured Hep C, treated a type of Duchenne Muscular Dystrophy with antisense therapy (an amazing and recent new technology that effects the way disease genes are expressed), have started curing sickle cell anemia (not treating, but *curing*), etc etc.

Of course there are a few cases where progress never seems to be made (Alzheimer's comes to mind) but progress is definitely being made, just slower.

You might prefer to only hear about it when drugs come out but, if you let it, you can get a little hope reading about this progress and imagining being closer to peace again.

Remember when HIV was fatal? Effective drug therapy was only a pipedream until it wasn't.

It's not impossible to repair the cochlea or even the brain. Remember, you started out as a single cell. Every single thing that you are made of was made by your genetic code while you were an embryo. You can be rebuilt using the same building blocks: your genes, transcription factors, progenitor cells and messengers. Science is catching up. I know it seems like forever but most of us are young enough to see this while we have lots of life left to still enjoy. I say this as someone in her early 40s.

I agree with you about dividing tinnitus, though.

 

I hate to think at our level of severity, we can't do anything to cope. So many in the forum say they have it as bad and it gets better in time. But do they really have it as bad, and does it really get better in time? I believe it for mild cases, and I'm hopeful for severe cases. I was under the impression that many who comment and give suggestions to severe sufferers have it as bad themselves and are able manage it. But I'm seeing much doom and gloom from those who actually say they have severe 9 or 10 tinnitus. I am still thankful for all those who care and take the time to give advice and keep things positive. But at some point, I need to know the blunt truth, and I'm worried it's not pretty.

 

I am one of those that has it severe and has beyond horrible hearing. Coping, adjusting and moving forward takes time, patience and making lots of efforts to see what can work for YOU and YOUR situation. Not everyone is the same, we need to try and see what can possibly help us out in our situation.

I am able to manage my situation, because I spent 32 years trying ways to deal with my situation.

 

I’m gradually learning to slowly turn the light switch on... if I go any flick it... I get a stabbing hyperacusis pain... it’s a learning experience... and, it sucks.

 

This is exactly what I need to hear. I'm not expecting quick easy solutions, but I will stay positive and get back to working out, working a job, and cherish and love those who care about me. Thank you fishbone!

 

See my video first - and then tell me whether mine is mild or severe?

I have made two conscious decisions regarding my tinnitus.

1. To try every reasonable option that I can find that may facilitate better coping.

2. I am determined to ‘live for’ my beautiful family and to continue to contribute to family life as best I can while searching for improvement.

On Bruxism.
You will never master relaxation with clenched jaws.
My childhood was a nightmare of isolation due to a mentally ill mother who could not bond with me.
Years later I went for psychotherapy to a brilliant woman who solved my TMJ pain by diagnosing bruxism, and coaching me - as above.
If you can control your jaws (soft mouth - hanging jaw) throughout the day, the practice will continue throughout the night.
Sorry to be so insistent, but always be aware of where your tongue is while mastering this ‘trick.’
(See above.)

 

I am also a broken soul my friend.

 

HI @Mark A

I am sorry to know that you are going through a difficult time with tinnitus. It is something I can fully understand and relate to as my tinnitus changed dramatically in 2008 and took me 4 years to habituate for the 2nd time which entailed having two years of TRT treatment. The tinnitus has large fluctuations in intensity and varies from complete silence, mild, moderate, severe and can reach very severe levels. When this is sustained sometimes I have to take clonazepam to calm it down as nothing else works. The tinnitus has improved since 2012 but it has been a long process and something I now accept and can comfortably live with. There were times I thought I couldn't go on and I'm thankful that I am here today as things could be a lot worse.

On your Avatar it reads that your tinnitus was "noise induced". Since you have read some of my posts and articles on this type of tinnitus, you'll know that is what I am familiar with as this was the cause of mine back in 1996 due to headphones.

You mention that your tinnitus was once easily masked but now it's quite intrusive and you hear it over many things, especially over the last three months. Noise induced tinnitus usually become worse for one reason and this is due to "sound" loud sound or using headphones even at low volume. As I have mentioned in many of my posts and you have probably read, I do not recommend anyone that has noise induced tinnitus to use headphones even at low volume. I have also stated not everyone with this type of tinnitus is adversely affected but many are. So, it is up to the individual to make this choice whether they decide to use headphones or not or go to places where loud music is played. Even when using earplugs there is no guarantee a person is safe, as sound can pass through the head and be transferred to the inner ear by bone conduction.

There are many people in this forum that will be quick to dismiss my comments on headphone use having an adverse affect on people with NIT. If a person chooses to ignore my advice and that is what it is, just advice and their tinnitus become worse, they will be the one in distress all by themselves.

I believe it's unlikely that the increase in your tinnitus is caused by an underlying medical problem within your auditory system or elsewhere in your body. Stress can make this type of tinnitus increase but this is usually temporary and will reduce over time. I am putting my money on sound being the cause of the increase in your tinnitus. If you have been using headphones even at low volume, going to places were loud music is present, or working in a noisy environment, then one or more of these things have caused the increase in your tinnitus.

Once a person habituates to Noise induced tinnitus, usually (but not always) it only becomes worse due to exposure to loud sounds or headphone use. Another factor is hyperacusis. People with noise induce tinnitus often have hyperacusis. Depending on how severe it is? If it is not treated or doesn't improve over time then problems with tinnitus can become a long term chronic problem. This will manifest itself by tinnitus spiking. However, from what you describe, the increase in your tinnitus I feel, is related to sound from the sources I have mentioned.

If you are able see a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis treatment and management, this I believe will be able to help you. Most likely you will require some counselling from these health professionals. It is no good seeing and ENT doctor as treating tinnitus is not their area of expertise. They are skilled at treating underlying medical problems within the auditory system that is causing the tinnitus. However, the actual tinnitus and the way if affects your mental and emotional well being needs to be treated by a Hearing Therapist or Audiologist. These people often have tinnitus and therefore have a much more understanding of they way it affects a person.

Best of luck
Michael

 

The person that started this thread should have every right to go to their doctor right now and work with him or her to acquire drugs that are not yet approved to try and treat their tinnitus and hyperacusis so long as they are consenting. End of story.

 

Although logically this headphone thing makes no sense to me, I rarely ever wore headphones for listening to anything. So the headphone issue is pretty much off the table. But what about hearing aids? Do they not cause the same as headphones? I wear earplugs if I think I may be exposed to excessive noise, and earmuffs over the earplugs if the noise level is really high. I have never entered a club, concert, or loud restaurants since the onset, but I have had occasional exposure that simply caught me off guard or I didn't realize it was possibly too loud. I agree if the noise level is very loud, there still can be conduction through the body that may cause further damage to our fragile compromised auditory system. Besides handling day to day life with this constant head noise, it sucks that we have to be so cautious with everything we do just to preserve our existing tinnitus levels. I have custom ear plugs and the best earmuffs I could find, but I still stopped using any power equipment such as mowers, blowers, trimmers, garden tractors, etc. I feel every time I do yard work for the day, my tinnitus seems a little worse and that adds up. I think tinnitus not only gets worse from additional exposure as you mentioned, but also age related loss as well. Thank you for your thoughts and insights, I appreciate you taking the time.

John, I agree and I have no problem going to ENTs. Since the onset, I have gone to about a dozen ENTs, from the House Ear Institute in Los Angeles to Johns Hopkins in Maryland and a bunch in between. I have never received anything of value from any of them other then ruling out possible medical contributors and offering prednisone, which did nothing. But interestingly every one of them shared they also had tinnitus. Must be some medical school empathy training. It would be nice if they took a little interest and responsibility in tinnitus treatments. Thank you for the thoughts and hope your day goes well.

 

Where I have been led to understand that you believing this is feeding your fear, and making your anxiety grow making the perception worse. It is what has also been described as "Distorted thinking." It's all so complex.

 

You can focus on the tongue on the roof of your mouth. Of course if you have misalignment this may be distressing if there’s not an “even” feel to it. I’m being treated with a 2-3 year splint program which should fix this over time. Hopefully by year 2 FX-322 will be out and we can stop wasting our time with secondary contributors to tinnitus and address the real cause—hearing loss.

 

I am always, here for you my dear friend

 

You think in phase 3 Frequency Therapeutics might blow open the restrictions to entry to tinnitus sufferers if their phase 2 findings reveal significant relief? Pure speculation obviously, but IMO this is beyond the issue of ethics in my opinion, and a matter of morality. Unfortunately ethics and morality often do not play well with each other.

 

I think they are actually working as fast as they can under the FDA rules and will change their strategy accordingly when they get results from each successive trial.

 

@Mark A

A lot of people share your opinion on headphones. I have discussed this many times in this forum and others. My experience corresponding and counselling people with noise induce tinnitus, has enabled me to reach the conclusion that people with noise induced tinnitus, that use headphones risk their tinnitus becoming worse. There are many posts in this forum that you can peruse where people with NIT have regretted using headphones, because their tinnitus has increased and will not reduce to its previous baseline level. As I have said in my previous post, it is up to the individual - as long as they are aware should their tinnitus increase due to headphone use they are the ones that will be in the distress all by themselves.

White noise generators and hearing aids are completely different to headphones and I have written about this many times in this forum. I shall try to be brief. A hearing aid uses a narrow plastic tube that wraps over the back of the ear and enters the ear canal. At the end of the tube is a tiny aperture where the sound emits. This is different to a headphone that uses a large diaphragm/speaker that generates and moves air pressure in the ear canal which only has one place to go that is towards the eardrum. White noise generators use the same principle as a hearing aid.

It is my belief your tinnitus has increased due to sound. You have said you rarely used headphones? So I assume that you have used them at some point? Whether it is headphone use or another source of sound, I believe it is this that has caused your tinnitus to increase if it was once at a much lower level.

Hope you are able to see the health professionals that I have mentioned.

All the best
Michael

 

I have warned people of the risks of overusing hearing protection as this can lower the loudness threshold of the auditory system. Instead of making this better they can make things much worse as the auditory system becomes oversensitive to sound. You might find my posts in the links below helpful.

Michael

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
https://www.tinnitustalk.com/threads/the-complexities-of-tinnitus-and-hyperacusis.25733/

 

tinnitus and neuropathy are old people diseases. Old people don't raise awareness for biomedical research. That's why medical academia has no interest in us.

 

Ok, I get what you are saying about headsets. I have not used them much at all, but have on flights with plugs. So hopefully the plugs have helped. But will stop altogether.

This still confuses me. If you think my increase in tinnitus is from some source of sound, yet I may be over protecting, I can't win.

 

T is quickly shifting to a young people condition these days. As bad as I think this development is, it does have the bright side that T is finally getting more attention.