My Experience with Tinnitus

I have variable tinnitus, which can be: silent, mild, moderate and severe. It no longer reaches the “extreme” levels I refer to in the post below: My experience with tinnitus. Hopefully it will give you some reassurance, that even when tinnitus is severe it can improve with time, and habituation will happen with the right help.

I believe my twenty years experience living with tinnitus qualifies me for saying this. Just the same as others in this forum that have had tinnitus for longer and also to those that have had it for less time.

Even though tinnitus is a common condition, I believe it is only those that have experienced intrusive tinnitus to the point where these levels have been sustained for a period of time and they’ve had to seek help at ENT will know how debilitating it can be. Anyone that hasn’t been through this process won’t have any understanding of what severe tinnitus is like or how it can affect one’s daily life and emotional well-being. For this reason, most Hearing Therapists and Audiologists, that practice tinnitus counselling, were either born with tinnitus or acquired it at some time in their life.

Health professionals that are dedicated to helping their tinnitus patients will know about the anatomy of the ear but won't have a clue of what this condition is like unless they've experienced it, as my ENT consultant once told me.

My Experience With Tinnitus

I have had bilateral tinnitus for twenty years and have learnt to habituate to it twice. Anyone that would like to read my early years with the condition I will be posting an article titled: Advice for tinnitus newbies and beyond at a later date.

My story covers the last seven years, when my tinnitus increased to insurmountable levels for reasons I’m not sure of. I was listening to music on my HI-FI late one evening and turned up the volume, although I didn’t believe the sound was set too high. I was listening to a Haydn symphony but the next day my tinnitus returned with a vengeance; it became loud and very intrusive for many weeks. I returned to ENT for further treatment and started a second course of TRT (tinnitus retraining therapy) that lasted over two years.

Although I had some success with TRT for the second time my tinnitus didn’t return to its previous manageable levels. I was left with large fluctuations in its intensity that could be variable on a daily basis from: Silent, mild, moderate, extremely severe.

My previous experience with tinnitus had taught me to try and have a positive outlook on life no matter how dire the circumstances. I learned this back in the days as a tinnitus newbie, and got inspiration from more experienced people at forums that were seasoned to tinnitus. Having a positive outlook helped me through some difficult times and I believed it would do so again.

I tried to remain optimistic that my T would return to how it once was but in October 2010 for the first time I began having doubts. I sensed my T had reached a plateau and things were no longer improving and depression started to set in. I made an appointment to see my Consultant and explained my concerns, and asked her to please be candid about my condition. I was informed that in all her years of practicing Audiovestibular medicine, she had only met one other patient with tinnitus as severe as mine. She explained the large fluctuations in my tinnitus, almost on a daily basis was not typical of the condition but said she wouldn’t give up on treating me. Her last words gave me a glimmer of hope.

I was prescribed clonazapam and told it is some times given to patients with severe tinnitus as it can help. I was advised to only take it when my T is very intrusive. If it is taken regularly the body quickly habituates to it so higher doses are needed to get the same effect. I was also told some people can become addicted to it and the side effects can be unpleasant. I found clonazapam helpful but didn’t take it regularly as I didn’t want dependency to set in. My GP monitored me closely with the amount of medication I was taking.

The fluctuations in my tinnitus remained and at times daily life became a struggle. When my T was moderate I could cope due to my previous years of habituation. However, when it was severely intrusive I had to take my clonazapam and go to bed whatever the time of day, as I just couldn’t function. My social life was non-existent and at times my positivity became very low. I was an avid reader and hadn’t read a book in over two years.

In March 2011, I began using a product that treats tinnitus. Over the following year the intensity of my T gradually reduced, but I must stress it was slow. I began taking clonazapam less and gradually returned to reading. It used to take me up to three weeks to read a novel due to the fluctuating intensity of my tinnitus; I can now finish a book in four to five days. My social life improved and I was able to carry out remodelling my house.

Christmas 2011, I saw my Consultant and mentioned the severity of my tinnitus was reducing although I still do get bad days but coping better without always having to take medication. I asked if it’s possible that I can remain as an outpatient instead of being discharged, just in case my T flares up again. I have a very good rapport with my Dr who readily agreed to my request.

My Dr was very pleased with my improvement and asked what had brought about the change. At that time I didn’t think it necessary to mention the product I have been using, as I believe it is a combination of things. Having a caring and understanding GP, Hearing Therapist and ENT Dr. Medication has also helped and also having a positive attitude and the belief things will get better. I thanked my Consultant and Hearing Therapist for all their help over the last four years. More than once I have made a phone call or written a letter to ENT and they have seen me in clinic.

The tinnitus device that I’ve been using I believe has helped a lot, and think it right to mention I have been using something. However, I have chosen not to mention its name as the inventor states it won’t help everyone. I took a chance as I was in a desperate situation last year and prepared to try anything. However, I did do my research and read at Forums, that it helped other tinnitus sufferers but not all. I am pleased it has helped me. I wasn’t looking to be cured, if my tinnitus remained at a moderate level and even spiked occasionally I can live happily with that (habituate). Only when it was severely loud and very intrusive on a daily basis at times, did it become a problem. I haven’t had to take clonazapam, as regularly there was a time I needed to take it every other day.

I would like to finish by saying: Tinnitus comes in many forms and intensities and no two people have it the same. It can be: mild, moderate, or severe. Intermittent or constant. In one ear or both. It can fluctuate or remain at a constant level. Hyperacusis (sensitivity to sound) can also be present.

Many people successfully habituate to tinnitus either with, or without treatment. This does involve acceptance and having a positive outlook on life and the condition and not to see it as a threat to your well-being.

Help is also available at an ENT clinic and each person's needs will be different. For some people their T will reduce to a level where they hardly notice it and may just require tinnitus counselling and using sound enrichment. Others may find hearing aid/s helpful. WNGs (white noise generators) are also good. In some cases medication can be prescribed. Success can also be sought using complementary medicine and/or tinnitus devices. There are really no set rules on how one reaches habituation, but I believe it is something that everyone with T can reach in time.

Michael

PS: The product that I used to help my tinnitus, I continue with it but won't divulge it to anyone so please do not ask. It is expensive and I would feel very guilty if it didn't help anyone that bought it.

 

Hi, thanks for sharing your story. I am glad to hear that you have found something that works for you.

 

That's kinda wise to say "I have something that helps but I will not tell you what it is because it's expensive" and "I don't want to feel guilty if it doesn't work"

Some people here are willing to sell their houses for the sake of sanity so if your statement is not a marketing technique i suggest you leave the decision to anyone who reads about the "product" you've used. Probably neuromonics.

 

Well said! Can't agree more!

 

Good grief.

Did he really say that or is my eyesight going as well?

 

Thank you for your story.

 

Michael,

Did you get my PM?

 

Is this some kind of joke? I hope people aren't stupid enough to buy into your BS.

 

Not a joke @Telis I assure you....
Michael

 

Ask for money then to reveal the "secret".

 

The name of the product I use is Tiex http://www.tinnitus.cc/en/index.php

 

http://www.tinnitus.cc/en/therapy-device/how-it-works/index.php says, in its first sentence: "In order to understand how ti-ex works, it is important to realize that the hair cells in the inner ear can regenerate."

Perhaps it's a device marketed for birds, since - unlike birds - hair cells don't regenerate in humans (yet).

 

Michael,

The device costs £290.. Hardly expensive. people spend more on wng's.

Just out of curiosity why have you never mentioned then device before to try and help people, seeing as it helped you?

 

That's because, unlike this device, white noise has been evaluated in scientific/clinical studies with results published and available for perusal to anyone.
WNG are still quite expensive for what they are, but at least they have some scientific raison d'être. Michael can tell you everything about it since he's been wearing WNGs for years.

 

Does the device emit a tone? I am confused how one would know it was operating.

 

£290 might not seem a lot of money to you @orbiter12 but to some people it is a lot of money when they don't have it. The inventor clearly states on his website that it won't help everyone with tinnitus. If someone bought it outright as I did and it didn't cure or reduce their tinnitus they might give me a hard time and I can do without that. I purchased Tiex in 2011 and it's basically stayed the same price.

If you go to the website there is scientific data that you can read where tests were carried out on a range of people with tinnitus of varying age groups up to 80 years. It has helped 55% of people. It either reduced their tinnitus or cured it. The other 45% noticed no difference with it.

According to the inventor Tiex should be used for around 4 months. If the tinnitus doesn't reduce within this time then it is unlikely to work. I didn't notice any improvement after 4 months but continued with it. After 6 months I began noticing improvement but it was slow. Over the years I have tried reducing it's use and stopping the treatment completely. After approximately 3 to 4 days my tinnitus starts to get louder and more intrusive. Please remember what my consultant told me who is an Audiovestibular physician. These people are more qualified than a ENT doctor. She said I was the 2nd worst tinnitus patient that she had met in all her years of practicing Audiovestibular medicine. I asked her to be candid about my condition because I felt that I wasn't making anymore improvement with TRT. It had helped but wasn't as successful as the first time I had the treatment in 1996-7

I took a chance buying Tiex. It can be rented for 4 months and returned or it can be bought outright and glad I did. I use it twice a day and I believe it has helped me. Those that are sceptical that's there choice but I know it helps me. I would have paid £1000 and would have got the money from somewhere as I was so desperate back in 2011.

Hope this helps
Michael

 

@Michael Leigh I'm glad you found something that helps you. Thanx for sharing. Wishing you even more better days.

 

But it has a picture of a very serious looking man staring at some test tubes... it's must be legit.

 

Your words did make me smile @Alue .......

 

If the device could actually make inner ear hair cells regrow which would cure T or substantially reduce the volume of noise, or partially restore hearing, I'd be the first in line to get one, even at many times the price they now cost.

 

Please go to their website @Luman and read the scientific reports on tests carried out with Tiex on people with tinnitus. It helped 55% of people. Look under PRESS reports It reduced their tinnitus or cured it. I started noticing improvment after using it for 6 months but stress it was slow... I still use it twice a day for when I've stopped using it my tinnitus becomes more intrusive over time....

 

You wouldn't be the only one: pretty much everyone on this board would be buying one. It would be so awesome that the whole world would know about it, doctors would be thrilled to recommend it to us, the inventors would be filthy rich, and the website would look like Apple's rather than something that I put together...

 

Definitely legit enough to get some people to pay, as this very thread attests.

 

That stock photo is hilarious. With a device that claims to use electromagnets, what exactly are they supposed to be looking at? Maybe the re-grown hair cells?

Agreed. Everything must be lost in translation because of their three press releases, one is advertising the product being sold by a couple and one mocks the product and says it does not work. Another claims the British Tinnitus Association was going to study the product. The article is many years old, it should be possible to find out the results of that unbiased study.

I cannot find any scientific reports on their site. Only vague references with no supporting data links and mentions of how magnetic fields work in other areas.

All that said, if you find a placebo effect that works for you, might as well stick with it. So much of coping with tinnitus is psychological. If you think it works and stop using it, then it’s very likely you will associate any negative changes to not using the product.