I wrote the post below in 2015 at another forum and therefore, it has been amended slightly.
I have variable tinnitus that 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 someone the reassurance, that even when tinnitus is severe it can improve with time, and in most cases 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. It is not unusual to find, some Hearing Therapists and Audiologists, that practice tinnitus counselling, were either born with tinnitus or acquired it at some time in their life as my Hearing Therapist, who was born with tinnitus.
Health professionals that are dedicated to helping their tinnitus patients will know about the anatomy of the ear and be able to treat underlying medical problems associated with it but won't know what this condition is like unless they have 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.
My story covers the last seven years, when my tinnitus increased to insurmountable levels in 2008 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. The next morning I woke to notice my tinnitus returned with a vengeance; it was loud and very intrusive for many days that turned into 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 did not 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 and 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 tinnitus would return to how it once was but in October 2010 for the first time I began having doubts. I sensed the tinnitus 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 the 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 it was moderate I could cope due to my previous years of habituation. However, when it was severely intrusive I had to take 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 tinnitus 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 the 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 home.
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 the tinnitus 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 and prepared to try anything. 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 experience 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 tinnitus 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 most people can reach in time.
PS: The product that I used to help with my tinnitus, I continue to use 7 years on twice a day. In the past I have been reluctant to divulge information about it. However, anyone that wants information on the device, please send me a private message. Please be advised it might not help you, and therefore I am not making any claims that it will. I am just submitting information so you can research the product for yourself.