Hello,
I have never posted on this forum before but have read many posts since first getting tinnitus about a year ago. I wanted to post my experience so far in case anyone finds it helpful and because it's a little therapeutic for me.
Things I have found helpful
In order of helpfulness:
I had an external ear canal infection to my left ear which took a couple of months to fully treat. The ear infection left me with "stenosis", which is a narrowing of my ear canal about 2/3 of the way in. Shortly after the treatment, I got pulsatile tinnitus – only when lying down to sleep. After a few months, I went to my GP who said I was infected again, so I started some treatment again (ear drops). It seemed to get better, but after a while in transformed one morning into subjective high-pitched tinnitus.
It is unclear what caused the tinnitus, but I do have some hearing loss (up to around 25db at 6khz+). The hearing loss may have been caused by violin playing over many years (I'm 40) as it's only in my left ear. It may also have been caused by the treatment for the ear infection, including what I now think was very bad advice from my ENT to keep my ear dry using a blow drier several times each day.
I was very stressed about the re-infection and this stress may also have played a part – I was constantly thinking about my ear.
I had extensive investigations including MRI but no concrete causes of tinnitus were found.
Early days
The early days of my tinnitus were probably like most people's. I found it very depressing, hard to cope, hard to think about much else. It didn't interfere with my work, but did interfere with everything else. I didn't know how I would live the rest of my life like this. That said, my tinnitus was pretty mild (i.e. quiet), so I'm lucky relative to those who have really loud tinnitus. I felt particularly hard done by because my main hobby is music and violin playing, which I found it hard to enjoy.
Additional factors
As well as my tinnitus, my stenosis causes me issues. My stenosis is like a "ramp" on the bottom and side of my ear canal. A thin film of dry white wax seems to rise up from this and increasingly close my ear canal. This causes me additional anxiety and stress, especially since sometimes I have mild soreness which I'm guessing is a result of this wax built-up.
This wax build-up also changes the nature of my hearing loss over time. For example, just after cleaning my hearing loss is 15 dB at 8 kHz but 5 months after cleaning it's 30 dB or more. Curiously, as my high pitch hearing worsens, my tinnitus seems to get better, but I may just be kidding myself. I'm not sure what happens after 5 months as this is the longest I've ever left it without cleaning.
Ideally I'd be able to get this wax out using ear drops, but I've not found anything that really works. Suction works but is so loud...
My private ENT has said that I could get a meatoplasty surgery to remove this stenosis, but it's unclear whether it would work and there are risks like damaging the facial nerve or damaging hearing. The NHS (UK public health) were very clear that they would not offer me surgery for this unless my ear canal was much more blocked that it is. Monitoring and making a decision on this causes me further stress and anxiety to this day – if only there were a miracle ear drop! Sometimes this is more stressful to me than the tinnitus (it is today because my ear got temporarily completely blocked after using some ear drops to try and clear the wax).
Improvement
A year in, I'd say that I'm now doing well 70-80% of the time, by which I mean able to focus on, and enjoy, other things. The main things that have helped me get here are at the start of this post.
I still have days where I get into a pattern of negative thoughts, which mainly focus around areas like "I should have avoided this", "why me", "what if this gets worse", "I'll spend the rest of my life coping rather than living". And I have some bad habits that I need to kick: excessive internet hearing tests, looking into my left ear using mirrors to see how the wax build-up is going sometimes multiple times a day, blocking my right ear to see if I hear ok with my left ear.
I will start having formal cognitive behavioural therapy sessions shortly, which I hope will help further.
I hope this post is helpful, especially to any newcomers wanting some hope that things can improve!
I have never posted on this forum before but have read many posts since first getting tinnitus about a year ago. I wanted to post my experience so far in case anyone finds it helpful and because it's a little therapeutic for me.
Things I have found helpful
In order of helpfulness:
- Time to adjust. The first months were very difficult. After a year, things are much better. I remember reading posts that things would get better and not believing them – but for me they have improved.
- Tinnitus: A Self-Management Guide for the Ringing in Your Ears by Jane Henry and Peter Wilson. This was a really helpful introduction to cognitive behavioural therapy which helps to change the impact that tinnitus has on one's life.
- The British Tinnitus Association's page on treatments. This provides a very useful summary of each treatment and which are proven to be effective/safe and which are not.
- Relaxing hobbies which require mental focus – for example I learnt to draw and did some computer coding (in silence). I see this as an important part of getting used to the tinnitus just being there in the background, and has the added advantage of being an enjoyable form of therapy.
- A relaxation exercise to just try and "zone out" my mind.
- Reading success stories.
- Looking up famous people with tinnitus. Sometimes it makes me feel better to be connected to some of the greatest minds of history. Darwin, Beethoven, Michelangelo, the list is long and distinguished.
I had an external ear canal infection to my left ear which took a couple of months to fully treat. The ear infection left me with "stenosis", which is a narrowing of my ear canal about 2/3 of the way in. Shortly after the treatment, I got pulsatile tinnitus – only when lying down to sleep. After a few months, I went to my GP who said I was infected again, so I started some treatment again (ear drops). It seemed to get better, but after a while in transformed one morning into subjective high-pitched tinnitus.
It is unclear what caused the tinnitus, but I do have some hearing loss (up to around 25db at 6khz+). The hearing loss may have been caused by violin playing over many years (I'm 40) as it's only in my left ear. It may also have been caused by the treatment for the ear infection, including what I now think was very bad advice from my ENT to keep my ear dry using a blow drier several times each day.
I was very stressed about the re-infection and this stress may also have played a part – I was constantly thinking about my ear.
I had extensive investigations including MRI but no concrete causes of tinnitus were found.
Early days
The early days of my tinnitus were probably like most people's. I found it very depressing, hard to cope, hard to think about much else. It didn't interfere with my work, but did interfere with everything else. I didn't know how I would live the rest of my life like this. That said, my tinnitus was pretty mild (i.e. quiet), so I'm lucky relative to those who have really loud tinnitus. I felt particularly hard done by because my main hobby is music and violin playing, which I found it hard to enjoy.
Additional factors
As well as my tinnitus, my stenosis causes me issues. My stenosis is like a "ramp" on the bottom and side of my ear canal. A thin film of dry white wax seems to rise up from this and increasingly close my ear canal. This causes me additional anxiety and stress, especially since sometimes I have mild soreness which I'm guessing is a result of this wax built-up.
This wax build-up also changes the nature of my hearing loss over time. For example, just after cleaning my hearing loss is 15 dB at 8 kHz but 5 months after cleaning it's 30 dB or more. Curiously, as my high pitch hearing worsens, my tinnitus seems to get better, but I may just be kidding myself. I'm not sure what happens after 5 months as this is the longest I've ever left it without cleaning.
Ideally I'd be able to get this wax out using ear drops, but I've not found anything that really works. Suction works but is so loud...
My private ENT has said that I could get a meatoplasty surgery to remove this stenosis, but it's unclear whether it would work and there are risks like damaging the facial nerve or damaging hearing. The NHS (UK public health) were very clear that they would not offer me surgery for this unless my ear canal was much more blocked that it is. Monitoring and making a decision on this causes me further stress and anxiety to this day – if only there were a miracle ear drop! Sometimes this is more stressful to me than the tinnitus (it is today because my ear got temporarily completely blocked after using some ear drops to try and clear the wax).
Improvement
A year in, I'd say that I'm now doing well 70-80% of the time, by which I mean able to focus on, and enjoy, other things. The main things that have helped me get here are at the start of this post.
I still have days where I get into a pattern of negative thoughts, which mainly focus around areas like "I should have avoided this", "why me", "what if this gets worse", "I'll spend the rest of my life coping rather than living". And I have some bad habits that I need to kick: excessive internet hearing tests, looking into my left ear using mirrors to see how the wax build-up is going sometimes multiple times a day, blocking my right ear to see if I hear ok with my left ear.
I will start having formal cognitive behavioural therapy sessions shortly, which I hope will help further.
I hope this post is helpful, especially to any newcomers wanting some hope that things can improve!
Member
