I’m new here with Tinitus and low frequency hearing loss, any advice welcome.

[PurpleFox19]

Hi I’m Lori, I’m 62 and several months ago now I noticed something wrong with my hearing.

It began with an echo in my right ear and incidents where my hearing would be blocked out momentarily with a loud ringing. Watching TV I noticed voices were distorted, tonally different to each ear and much quieter in my right ear. My other half is a bass player and I couldn’t hear him playing the bass. I worried I was losing my lower frequency hearing.

The Doctor suggested wax removal and an audiology test. My right ear was particularly impacted and the test confirmed I had reduced low frequency hearing in my right ear.

The doctor then referred me for an urgent ENT appt. I’m still waiting for it a month later( they chased it so should hear this week). I’m extremely worried and fearful about what the results will be I’m also fearful of what potential tests will mean. I have Agrophobia (manageable now as I’ve had it for years) but the thought of an MRI is very scary.

I think I’ve had very low grade tinitus for years ( being around music and musicians most of my life) but since this sudden hearing loss the tinitus has become increasingly worse to the point now where it is completely impacting my life. I’m awake at 4am most nights with ringing in my ears. Particularly my right ear though sometimes both and more central. I experience what I can only describe as a wall of white noise against my right ear (this most of the time) Sometimes my ear feels full, sometimes it feels like liquid moving.

I have a great deal of stress going on in my life at the moment too, I wondered how much this could truly be contributing to the problem.

There’s so much great advice on this forum and I’m so grateful for it. I’d like to ask if anyone else has Tinitus and hearing loss, particularly low frequency, in one ear? and if there’s any advice you can share

I also just want to say hello and that I’m so grateful to have found this community of fellow sufferers. It’s very reassuring to know I’m not alone, especially when I can’t sleep in the middle of the night and everything seems so much worse

[perlcoder]

Hello Lori,

Although I have no advice to offer relative to the particular symptoms of your T / hearing issues, I thought that I would just offer a word of welcome and some general comments. As I am sure you have noticed, this is a relatively low-traffic forum and it can be a while before someone responds, especially where the case is slightly unusual.

You will find here more than a few posts from people nervous about the MRI itself for one good reason or another, I hope that you will also see how many report back to say that it was not so bad. It doesn't take long, and in my experience the medical staff are friendly and accommodating. The assistance that the result will give in arriving at diagnosis and the consequent release of the tension caused by not knowing (which is usually the worst thing), is very well worth it.

Life stress is, of course, very highly correlated with the onset of bothersome T. We can only hope that, whatever the cause of that stress, it will abate soon and remove at least that aggravating factor from your condition.

One aspect of your experience that I certainly can understand is the 4 a.m. awakening prompted by the horrible wall of white noise. I suffer from it and recognise the exhausting process of the startled emergence from sleep, checking the time, and trying to find a way to cope. for what remains of the night. My own T is very predominantly left sided, which is the ear in which I have significant hearing loss. I find that those awakenings tend to occur when I have been sleeping on my right side, so that the defective left ear is, as it were, the "duty ear", and my auditory brain hates to be fed its defective input. I do naturally favour sleeping on my right side, but of course we can't control the fact that sometimes we turn over. I am currently experimenting with Soundcore a20 sleep buds, designed for side sleepers, to provide my favourite masking track at low volume overnight. I set my phone to direct more volume to that left ear. I am finding this useful, but my testing is not yet done. I do also find though, that notwithstanding a claimed 9 hours of use, mine don't usually do better than 6 hours and my brain notices the fact when they run out of power.

Try not to worry - easier said than done I know - your MRI, ENT appointment and diagnosis can't be far off now.

Best wishes.

[PurpleFox19 in reply to perlcoder]

Thank you so much for your reply which is very reassuring, I can’t tell you how much that means. This is all making me feel very emotional at the moment.

Although I have been listening to birdsong through regular earbuds for a while, last night i listened to sounds via the Tinnibot app (which is great) and that was a success in the sense that I managed to stay in bed until 6.30am, but have paid for it since. This morning has been absolutely dreadful, I could barely hear people around me speaking.

I will look into some more appropriate earbuds so thank you for the recommendation. I also think some made ear defenders will probably help.

Isn’t it strange that you would need both something to mask noise and block out sound too. I just don’t know which is appropriate at any one time at the moment except of course when the Tinitus is screaming

[perlcoder in reply to PurpleFox19]

Hi Lori,

You are most welcome. T is a lonely place, and onset is a horrible time. I believe that I too had mild symptoms from a very early age - 5 or 6. Before sleep I would hear a kind of mild pinging sound - I told myself that it was my brain cooling down. It didn't bother me at all until it became more noticeable when falling asleep in my mid 20s. By this time I had been to Uni and had spent a lot of time in headphones listening to all kinds of music way too loud. I blame myself entirely for that, I have no doubt at all that those years were a major source of damage and subsequent T. In later life I was a barrister and working, as barristers do, far into the night, in the silence of the night, and living the fun, engaging, stressful life that goes with it. My fault again, and the T was that much more prominent as I fell asleep. Serious onset was more than 20 years ago and I carried on working after that, without the T interfering too much. Cancer then led me to take early retirement when I was about your age and in the leisure that has followed, the T has gradually intensified.

We all find our own means of coping and of masking where that helps. My personal favourite are those produced, at very reasonable cost and free to sample, by

youtube.com/@dalesnale

His Sweeping High Frequency Noise is perfect for me, somehow my T gets lost in it, and I find the sound quite pleasant (as maskers go 😏). He does 10 hour versions and that is the one I now have in my earbuds overnight. By the way Ozlo buds are an alternative to the a20s - though more than twice the price. You will find reviews on YouTube and elsewhere.

Best Wishes

[PurpleFox19 in reply to perlcoder]

Hi Perlcoder

Thank you for the YouTube link. I listened to the sampler and found a couple of low frequency noises that masked my T particularly the 10 hours of Green Noise. What a difference it made! of course that was last night and tonight may be very different. I’m starting to realise this condition is quite unpredictable.

[Fridays_Child_62]

I understand how daunting all this must be for you. I think people (including doctors) underestimate how intrusive and disturbing tinnitus and other hearing issues can be.

One thing I will say... although things seem bad now, you may find that your ears eventually settle down into a more tolerable state.

Six years ago, I had an ear crisis, one of my worst. This included some symptoms that you are describing. I already had tinnitus, but it became much more erratic in terms of loudness and noises/tones, and I would sometimes wake up in the morning feeling like I was in a bell tower. I also had some periods of low-frequency hearing loss in one ear, but these lasted for hours and no more than a day. The sensations of fullness and trickling liquid in the ear are also familiar to me. I think that at least some of my issues related to muscles in the ear tensing and sometimes stretching the ear-drum (something they do naturally to protect your inner-ear from very loud sound). My ears took weeks/months to settle down, but I can get relapses.

So, bear in mind that what you're experiencing now may not continue indefinitely, although you may have to get used to your ears being temperamental in the future.

[PurpleFox19 in reply to Fridays_Child_62]

Thank you so much, again this is very reassuring to hear, though I’m so sorry you have also experienced some of these issues.

I have to say I never appreciated how debilitating Tinitus and hearing problems could be, but I guess you really do have to experience them in order to understand.

[perlcoder in reply to PurpleFox19]

After years of this, I am convinced that the most important factor in T is the personality of the sufferer. There are people (I envy them more than I can say), who, after the shock of onset, find a way to cope. I am quite certain that their T is as bad as anyone's and worse than mine, but somehow, as it were, the ship rights itself and they sail on genuinely (it is not an act), living well. Some get there with the help of CBT, TRT, Mindfulness, meditation or some other technique, but those aids are not as important as some think they are. The person is all.

[perlcoder in reply to Fridays_Child_62]

It is understandable I suppose that doctors are not comfortable with conditions that they know to be incurable by any medical means, and more so when the condition is not in itself life-threatening. All they can do is to sit there and disappoint you, and there must be an impulse to get the bad news over with and, hopefully, do something useful for the next patient.

[Sweep123]

Hello Lori

If you’re hearing has suddenly dropped it may be worth asking your GP for a course of steroids as they are often successful in restoring hearing loss if it occurs suddenly. Some GP’s are not familiar with this and because there is a such a short time span for success so you could attend A&E.

I wish you well, it’s a very testing time.

[PurpleFox19 in reply to Sweep123]

Hi Sweep123

Thank you so much for your reply

Unfortunately I doubt the steroids would work as the sudden hearing loss began about 8 months ago now, but I will mention it to the GP for future reference as they seemed at a loss to prescribe anything for me beyond management until the ENT appointment comes through.

Don’t misunderstand me the doctor was thorough in his examination and offered all sorts of resources for which I was grateful.

[Hel_C]

Sadly, I found my ENT appointment, at best, disappointing. I have been referred again and expect an equally long wait. Saying that Minder offer some good master classes for a range of tinnitus types and Tinnitus UK have some monthly support groups that are really helpful, if you want to check those out. I do as much as I can to manage my anxiety which then helps my tinnitus.

[PurpleFox19 in reply to Hel_C]

Thank you for the suggestions Hel_C I’ll check out the support groups you mentioned. So far I haven’t really suffered with anxiety (surprisingly) but certainly stress and I think that is having a big impact on my T. I’m making an effort to do yoga regularly and that seems to help.

[Ultrarunningman]

Hi PurpleFox19, I'm sorry to hear you too have been suffering from T. I'm new to this forum; I wanted to reach out to people as I broke down twice yesterday due to spikes in my T and anxiety. Im very resilient so it takes a lot for things to get to me!I too have been diagnosed by an Audiologist for having around 20% hearing loss in my left ear. They gave me a Oticon sound amplifier with wave sounds loaded on. The hearing aid setting does help a bit with my hearing but when my T is bad or spiking (which is about 4 times a day) I can't even hear the wave sounds.

I also have lots of stress, I have a very stressful job working 12-14 hours days which I've been doing for 5 years. I think it's definitely taken it's toll. I've seriously thought about getting a less stressful over the last few weeks!

Im sure your T will settle down over time, I'm hoping mine does. I feel your pain with waking at 4am, it's absolutely exhausting. I've just about started to manage getting back to sleep but it takes me over an hour by which point I have to get up for work.

Try and keep the faith, there seems like there's lots of good advice and friendly comments on this forum. ☺️

[PurpleFox19]

Hi Ultrarunningman

I totally relate to your breaking down yesterday, I do it daily at the moment because T and hearing loss is relatively new to me and I’m struggling to understand it and to come to terms with it.

But finding this community is really helping. I’m glad you’ve found it too 😊 the friendly support and advice offered and connecting with others who understand and empathise really does help doesn’t it.