Advice for Newbies

This is my advice for all the newbies so they know how to handle this terrible affliction. Please feel free to add your advice for all the newcomers dealing with Tinnitus and Hyperacusis.

1) Don't panic, tinnitus will reduce, it always does, usually it fades 1-10 months. After 11+ months it becomes much harder for it to fade away but its still possible. Most people feel better from 1-12 months. For a selected handful of people it will GO AWAY COMPLETELY, though dont bet on this because you are likely to have Mild Tinnitus. When I had Mild T last year it faded from Moderate to Mild in two-three weeks and remained like that. This was back in September-December 2017. You are probably asking yourself what is MILD TINNITUS like? Well I could only hear in a quiet room and sometimes I couldn't hear it at all unless I Searched for it . Hyperacusis also gets much better, even more so than Tinnitus does. Once again DON'T PANIC! PLEASE! Try to forget it about it, distract yourself, the more you seek tinnitus the more it will wreak havoc. I became obsessed with my Mild Tinnitus and tried to eliminate it, it was foolish of me.

-My friend has tinnitus and he lives a great life, his tinnitus is mild (white noise), finishing his master's
-Another friend has mild tinnitus and she lives a normal life, her tinnitus is mild, though sometimes it can be acute
-Family friend has mild tinnitus that can only be heard in quiet rooms.
-My first doctor had mild tinnitus from tires blowing up in a small room, he lives a great life.
-My Audiologist has Tinnitus from playing in loud bands, he has mild tinnitus, has habituated, but has multiple tones. He still plays in a band and wears earplugs (P.S Thank you Mr. Audiologist for making my tinnitus worse when you didn't believe I had an acoustic trauma)
-Another family friend has tinnitus and he lives an ok life, his tinnitus is mild.

See there are success stories but they are not on this forum. Don't try to look for a cure and waste your time, damage has been done, but life is not over. If you keep stressing about it you will make it worse so the best is to just move on. Don't obsess over it or you will make it worse.

2. Hyperacusis usually gets better, dont overprotect your ears. Only protect your ears when exposed to hazardous noise. Examples of hazardous noise: Clubs, Cinema, Concert, Leaf Blower, Blender, Vacuum, Hair dryer, Blow dryer, Subway, Police/Ambulance sirens, Loud Venues. Rule of thumb if you have to raise your voice over the music in a restaurant then put the plugs in.

3) Always carry earplugs with you. ALWAYS! If you are exposed to sudden noise, cover your ears with your fingers. What I do is I cover my ear with that flap in front of it, don't know the medical term for that cartilage in front of the ear. I had an ambulance go pass me while I was outside on the street, it was loud as hell. I covered my ears with that flap in front and nothing happened (this was when I had Mild Tinnitus). Your ears CAN easily get damaged now, so be very careful with them.

4) NEVER EVER let ENT/Audiologist touch your EARS. No Microsuction, No Acoustic Reflex, No Tympanometry, No Caloric Test or Ear irrigation, No Electrocoleography, No VEMP, etc. ENTs will say they are SAFE but THEY ARE NOT! AT LEAST FOR US. Ear tests are quite dangerous for people whose ears are already damaged. Most forum users are sad that their ENT said "Go away, live with it". Some ENTs will say that but others will try to get money out of you. "Live with it" That is the best advice you can get. Leave it alone for 6-8 months and if you dont have Ear Pain or Vertigo accompanied with Tinnitus then don't do the EAR TESTS/DON'T VISIT ENT. I wish my ENT said that! My ENT diagnosed me with 30 diseases and because of that my tinnitus worsened. The more tests done the more money, your suffering is ENT's joy. Tinnitus has lags sometimes, so it can be delayed, for example you can be at a concert Monday night only to get tinnitus Wednesday Afternoon while being on a computer reading a news article. Tinnitus is primarily caused by acoustic trauma, TMJ, Ototoxicity, etc. Acoustic Neuroma is less common as is Meniere's Disease.

5) HABITUATION is possible, don't think think its not, but only for people with Mild/Moderate Tinnitus, the more intrusive the harder it will be to habituate. I had Severe Tinnitus for 8 months and I haven't habituated. However when I had Mild Tinnitus last year it took me so fast to habituate - 1 month. So if you have Moderate Tinnitus you are likely to habituate, in other words your brain will push the sound to the back of the head, you will not be aware of it, but it will be there. Imagine a loud clock ticking in your room, for some people sleeping in your room would be impossible, but for you its just a non bothering noise, your brain filters it -this is habituation.

6) THIS FORUM is a great help but it can bring huge problems, as it can induce a lot of anxiety and stress. There are a lot of tormented souls on here, but remember this is a minority, us frequent users on this website are severe cases, we come here to vent and this place is where we suffer. If you spend too much time on here you will also become a horror story. REMEMBER THERE ARE MORE SUCCESS STORIES THAN HORROR STORIES! It is just that most people who live with it don't come here, there is a huge skew which makes it seem that this is the end. Remember more success stories than horror stories.

7) READ @Michael Leigh articles on how to deal with Tinnitus and Hyperacusis. If you are new to tinnitus please get in touch with this amazing and educated individual, he means well for everyone and is a genuinely nice guy. I am surprised he didn't write a book that would help people with this terrible disease.

8) EDUCATE, EDUCATE, EDUCATE!!
In school we learned about nonsense and useless information which didn't really help me in life. PLEASE MAKE SURE TO EDUCATE PEOPLE ON THIS. Tell your friends and family what Tinnitus/Hyperacusis is. My grandfather who is 73 never heard of tinnitus, when I played a YouTube video of my tinnitus frequency he didn't believe it. He was shocked to hear such a horrible sound, he threw his mp3 away as he likes to jog/walk with them. I tell my friends to protect their ears.
We need to educate the public on hazardous sounds.

9. SOUND OASIS MACHINE
To help you with hyperacusis, so the ears get accustomed to every day noises, and for the brain to push tinnitus further back into the brain.



If you have any other questions for me feel free to contact me or send me a pm.

Yours truly,

Dp/Dx

 

Thank you for your kind words @dpdx and for writing such a informative and helpful post.

My passion for tinnitus runs deep because it and hyperacusis changed my life dramatically twenty two years ago and I was determined to learn as much about it as possible. I eventually habituated but in 2008, my tinnitus increased to insurmountable levels after what I believed to be a second noise trauma. It set me on a new path to uncover more about this condition. Not just from my own experience but also corresponding and learning from other people affected with tinnitus, particularly “noise induced”.

Tinnitus comes in many forms and intensities and no two people experience it the same. Whether its onset was caused from an underlying medical problem or more commonly noise trauma, it will often affect people differently. It is for this reason all my posts and articles are primarily for helping people with “noise induced” tinnitus because that is what I am familiar with. This is not to say people with tinnitus caused by: Hearing loss, meniere's disease, Otosclerois, TMJ, head injury, stress etc will not find them helpful. Some have and have told me so.

There are some very informed and experienced people at this forum, ready to help anyone seeking advice or to acquire a peace of mind that is often sought after, when so much negativity surrounds this affliction. Contrary to what some believe, there is a way forward with tinnitus. With time, patience and a positive attitude a lot can be achieved.

The closest I came to writing a book was my article: Tinnitus, A Personal View. Although I enjoyed writing it, at times it became an arduous task because my tinnitus is variable and can be very loud and intrusive which can make creativity difficult. It may not seem like it but that project took many months to write. Something of that length or longer, I am not likely to undertake again, unless I had particular interest to do so.

Thank you once again for your kind comments.
Take care

Michael

 

I urge any reader to take this advice with multiple grains of salt, as some of your advice is downright dangerous.

I understand you've had bad experience with your doctors, but not letting ENT doctors examine your ears is closing the door on having a chance at finding what is wrong with you and getting treated and cured. Worse, you may have a condition that, if untreated, will progress to something much more serious.

For example, your advice can lead people with infected ears to let the infection progress in their ears with disastrous consequences.

It would also have led to me not finding out I had otosclerosis, not having treated it, and not having recovered most of my hearing. I'm not sure where I'd be today if I had foregone treatment.

 

@dpdx,
Although I agree with most of your posts I strongly dissagree with you on what I have quoted from your post.

Tests need to be done and scans and wax removal and not everyone has problems from the tests,I certainly haven't and it's wrong to put members off having these tests.
However saying -make sure you read and understand about test and any risks would be better advice

love glynis

 

I said to let ENT look at person's ears inside but not let them preform ear tests unless they have vertigo or ear pain.

 

I have no problem with anything you wrote accept



I know suffer @dpdx and I know you will be regretting this statement within a few days
there needs to be a therapeutic for tinnitus/cochlear damage and the ENT's that damaged your hearing should have to pay for it out of there own pocket!

don't give up the fight!

 

This is what you said (verbatim):

Even your amended statement above is dangerous.

Feel free to describe what happened to you, but refrain from providing medical advice. Telling people to skip medical tests is medical advice.

BTW, the tympanometry test provided a big clue to diagnose my otosclerosis: I had no reflex on one side. It was a very useful clue to get, even though I did not have any vertigo or ear pain.

 

You are right we need a treatment but I am telling them not to go out and look for a cure. There is no cure out right now but scams. We need to fight for a treatment. Yeah I switched my ENT and Audiologist, I have muffled/distorted hearing on the right ear. It feels weird and buzzy...still dealing with H on both ears

 

Perhaps it is the best we leave @Michael Leigh to do the counseling on here.

 

You are right, people should know of the risks from the tests.

 

He may be well meaning, but he is no doctor either.
Leave medical advice to the professionals. You can already play a big role by providing support to sufferers.

 

I just think medical professionals dont know the risk of making T worse for people who have it. I was told by medical professionals that ear tests are safe and here we are 8 months in with Severe T and H. Doctors need to refrain from doing ear tests on people who have hearing damage, it can exacerbate the Tinnitus and make it permanent.

Medical Professionals dont know much about Tinnitus/Hyperacusis. Therefore people need to be aware of the risks of doing ear tests. My audiologist didnt even believe I Had an Acoustic Trauma but Meniere disease, so sometimes you need to be careful with them.

 

Everyone contributes on the forum and give great support to members needing help.
We are not medically trained or have been trained at university as professional counsellors including @Michael Leigh but his wise knowledge over the years gives great comfort to members on and off the forum .
love glynis

 

Thank you @dpdx for your comments. You are a very kind person and someone that I have a lot of respect for. The reason is because you have always shown manners and respect towards me and others and it's duly noted. It shows that you were brought up well and have good character, something that I believe is lacking a lot in society today.

Many in this forum can give good counselling on tinnitus. One has to have the condition to be able to advise on it, for it is not something that can be learnt. It is for this reason many Hearing Therapists and Audiologists that practice tinnitus treatment and management with patients, were either born with the condition or acquired it at some time in their life. Whilst it's not a prerequisite for one to have tinnitus to be a good counsellor, unless a person has experience of it they can never truly understand the condition and how it can affect a person's daily life and their emotional wellbeing.

All the best
Michael

 

I totally agree with the above and I think this is why Tinnitus Talk is a great place to come ...

 

@dpdx I remember you were struggling a lot with a loud spike and floaters. How are you now? Are you doing better?

 

Tinnitus is still bad. Hyperacusis today is better I can actually somewhat communicate with other people. The sound of my own voice brings me discomfort. Floaters are so bad that I see them now on an overcast day.

 

This is so important I wish I'd known that during the first days of my Tinnitus and might have been at a different place right now.
Anxiety is the worst combined with T.

 

This is a great thread for newbs