I developed tinnitus last year. Firstly on March 2021 when I became aware of a rapid ticking noise on one ear at a moment of extreme stress overseas, then it popped up again in November whilst living in wet Wales, after a sequence of anxious events. I have had a bit of insomnia and disturbed sleep recently, and the ticking noise I can relate directly to whether I sleep or not...and it always comes on 12 hours after a night with no sleep. I have slight hearing loss, and have now noticed that when the ticking is not there I have a sort of smooth background sound, which I suppose I can ignore, it is the ticking that is the problem. Actually I suspect the ticking is always there but after good sleep it gets masked.
I am a 60-year old musician and linguist, at the moment working on an album and improving my Arabic. I have always tried to avoid loud noises and do not habitually listen to music - only create it in a quiet environment (although I did some gigging informally a few years back).
I suppose my main aim is working out if it is objective or subjective tinnitus - in other words, does it have a cause? If it has a cause I can influence it and get on with my life. I wondered if the ticking part was Stapedial Myoclonus.
After a great struggle to see a specialist I have seen three, and none is a specialist in that area. In fact none seems to deal with anything other than the situation where you just have to get used to it, which is a bit depressing. One, however has prescribed me with Diazepam to see if that stops the ticking when it starts, as it is a muscle relaxant. However he and I seem to have been at cross purposes, because I only want to use this diagnostically, whereas he want me to take it all the time. I am a lifelong avoider of medication so I am just waiting for the ticking to start now so that I can test it formally. As I have re-learnt sleep patterns, I may be waiting a while.
In the overall scheme of things, if I can defeat the ticking, I still need to improve my hearing and I have been told this is impossible. However I am also told that stem cell replacement is becoming more and more available, and this works.
So I have two questions. Firstly, does anyone out there have experience of Stapedial Myoclonus, or any other condition which creates a rapid light ticking noise in one ear, and secondly, does anyone know the current situation with stem cell therapy in the UK - is it there, does it deal with mild cases of hearing loss or is it only an emergency treatment for severe problems?
Thank you for anything you can tell me, there seems a dearth of information on these two topics.
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Cara
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This may not be very helpful, but I most of us tend to welcome any relevant feedback, even if it may not eventually be useful.
In childhood, I would sometimes hear that ticking noise before falling asleep. It scared me a little, and I never told anyone about it. Either it disappeared entirely, or I stopped noticing it sometime in my teens.
Fast forward to 2000, when I developed the T from which I still (and, sadly, with increasing severity), began to suffer. The ticking sound was there as the T began - at first intermittently, day on / day off. I reported it to the ENT I consulted at the time. He dutifully recorded it in his notes, but did not ascribe any significance to it.
As my T worsened, the ticking vanished - drowned in the deterioration perhaps, I don't know.
That is my experience. As I said, it probably won't be of any use to you, but perhaps it is a tiny piece in the jigsaw.
Hi Perlcoder. What I find is that the unilateral ticking arrives when I have not slept enough. I am normally an excellent sleeper but recently have experienced problems. When I have slept enough, I just have a bilateral background noise, which is not unpleasant. What I am aiming for is sleeping enough and regularly to be able to focus on the second sound, the bilateral background noise. A recent blood screen shows my cholesterol is a bit high and I know I am coping with a lot of stress. So I am hoping to be able to reduce everything soon.
I am very keen not to take sleep meds or anti stress meds except to diagnose, a fact which seems to be being missed by my GP and specialist!
What you said is useful in terms of tying the two sounds together. I think the second sound is the brain's way of masking the first, which springs into action when the brain is feeling well (after sleep!)
For the 20 + years I have suffered from T, there has been a sleep connection - I suppose that is true for the majority of us.
In my case this has come in three stages:
(1)Initial panic at onset. At that stage it was more the panic than the T that disturbed my sleep,
(2) After a few months the panic went away. The T was not so very bad, and was day on / day off. If I woke in the night I would hear it, but be able easily to go back to sleep. This continued for about 15 years. I think that, whether we know it or not, through subconscious anxiety and it audible presence, and to a greater or lesser extent, T undermines truly restful sleep for a great many of us.
(3) The past 5 years have been much worse. My T has become constant and far more intrusive. As for sleep, I still fall asleep easily - that has been true all my life - but the T does wake me early and often several times in the night. It most definitely had interfered substantially with restful sleep during this period.
Like you, I have never been keen on anti-stress or sleep medication, especially since most of it helps people to drop off rather than to stay asleep - the latter being my problem. For a time 5 years ago I was prescribed amitriptylene, which I had previously taken for post-herpetic neuralgia, and which had, in those pre-T days had the side effect of making me sleep very soundly indeed. Unfortunately it was useless against T.
For a different reason I was prescribed Sertraline for a year or two a while ago. Some T sufferers say that it was the cause or exacerbation of their T, in my case it did not have any effect on the T or my sleep. We are all different.
Thank you, that all makes sense, and gives some context. I have only suffered with this since turning 60, and it only worries me because I am a musician and a linguist, and I feel the need to keep a close eye on anything that will interfere with these activities. I have started exercising daily and working to check my cholesterol, as all else seems fine. I seem to have it only if I miss sleep, so am working to make sure I don't. It amazes me how little knowledge there is regarding this amongst the medical profession, compared with visual matters.
As to the medical profession, what I will say next is a purely personal perspective, others will disagree, I may be wrong.
At any one time there is a great deal of research being done into T, its causes and treatment - and a pragmatic organisation like the BTA does its best to help, but I think that the problem with most in the medical profession is that, sadly, from a doctor / patient point of view there has been no significant progress, ever.
We know that noise exposure and a few pharmaceuticals can cause T, and that in many cases age-related hearing loss make it worse. We also know that, in appropriate cases, hearing aids and maskers can help. Finally, we have some talking therapies (CBT, TRT), that help some people to live with T to the extent that they barely notice its presence - and good for them. Personality and attitude play a huge part. At the moment, that is the end of the story. I know about Lenire and Susan Shore and attempts to re-grow cilia, but in my inexpert opinion, they are not yet effective therapies for most of us and may never be.
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