I'm posting this on behalf of someone else who is highly likely autistic. They have had severe high pitched tinnitus for a few weeks which started 3 days after wax being removed by practice nurse (ear 'syringing') GP has arranged referral to ENT doctor but wait is nearly 5 months. I read that tinnitus is often linked to some hearing loss in certain frequencies (the brain tries to "fill in" the missing sounds) and if so, hearing aids can help. Free hearing tests are available at Specsavers, but hearing aids from them cost £495-£2500 plus, whereas they would be provided free from the NHS, but after a potential 5 month wait suffering from a debilitating constant sensory assault with the usual associated anxiety this causes for those of us on the AS spectrum (although it can of course also be a strain for people who are not autistic) Two types of anti-anxiety medications have been prescribed so far, but neither seem to help.
I just wanted to ask if anyone has suffered with tinnitus, and if so whether hearing aids helped?
I have had tinnitus for years. For me, it's like a high-pitched whine - I describe it as like having a fine silver wire strung taut through my skull.
I'm usually only aware of it when it's quiet e.g. at night, in bed. But in the 2 weeks after my diagnosis it seemed so loud all the time I was surprised other people couldn't hear it (stress I guess).
Anyway, I've never tried hearing aids or anything else - I'm used to it now.
I guess that doesn't help much.
I have hyperacusis (brain perceives sound as pain), highly sensitive hearing, and pulsatile tinnitus. Was diagnosed with all of thee shortly before being diagnosed with AS. After having a CT scan to rule out any abnormalities, I was fitted with a sound generator which plays "white noise". This is designed to desensitize my ears. Jury is out as to whether it is working (can take a couple of years) but I do find that actively listening to the sound calms me if I am having a bit of a meltdown. My hearing therapist reckons it is intrinsically linked to autism.
There are a few FB groups about tinnitus and hyperacusis.
hi,i put my tinitus down to working as a carpenter and being surrounded by noise most of the time(before anybody thought about wearing plugs or defenders)
i can control it up to a point,bothers me more if im depressed more if you get me,its like someone pouring a very fine crushed crystal.i believe for a price you can purchase noise cancelling aids!?.i find it cheaper to have music or talk on the radio around me at a reasonable level.
I've always had very waxy ears and suffered with tinnitus (high-pitched, pulsatile, constant, at least four different sounds going off at the same time) so last February I decided to have my ears syringed to try and reduce the tinnitus. However, it made it slightly worse. I thought, as my ears were clear of wax, that it would be a good opportunity to have a hearing test (at specsavers). It proved I had a hearing loss and the lady told me to take the results to my GP for a referral.
After 9 months I finally got an appointment with the ENT who was, quite frankly, useless. He actually shrugged and said, 'Guess it's just one of those things.' He confirmed what the lady at specsavers had said, that I could benefit from hearing aids, and around a month later I got my hearing aids fitted. The audiologist who did the fitting told me I'd had a slight loss since birth that had been exacerbated by pregnancy (Otosclerosis, where the tiny bones in your ear fuse together, thought to have a connection to hormones.) Somebody should pay her the ENT's salary.
I totally get the anxiety. I was ill constantly last year, because of the stress of waiting for the ENT appointment (not to mention the three year wait for an autism assessment) but I would say that having the aids has made everything so much easier. It can't get rid of tinnitus, but making all the other sounds louder helps to drown out the tinnitus, and its not so distracting when your struggling to keep up with a conversation. It's also quite useful because you can say, 'Sorry, I've got a hearing loss,' and people don't get annoyed if you can't keep up, even if it's not the hearing that's the problem.
I would say to your friend to definitely get a hearing test now for peace of mind, and, if they do have a loss, try to find coping mechanisms until they can get their aids. I was often told that people struggle to get used to hearing aids, but I took to them straight away, even with the anxiety of putting things in my ears. Anything to lessen that awful ringing is worth it in my opinion.
Hope this helps :)
I have profound loss in my left ear, and some in my right. I also have permanent tinnitus in my left ear.
Some days, I cope better. Other days I want to rip my ear off, it's that aggravating. The biggest thing for me which might help is that it is always worse when I'm tired. It seems louder somehow. So I have to make sure I get enough regular sleep and it's bearable.
As for hearing aids, I haven't found them to help combat hearing loss over tinnitus, unfortunately. It's not to say it doesn't work, but for me the extra sound makes little difference. Tinnitus originates past the eardrum, so it's irrelevant how much sound get pumped into the ear.
I would suggest sound therapies - there's noise generators on the web and apps that can help mask the sound. But it's if the person can cope with those sounds. Seashores are a good natural sound alternative, or rain. Any kind of sound that generates almost randomly across all frequencies. Alternatively, do a Youtube search for Tinnitus Sound Therapy and you'll get lots of long videos of different types of sounds.
It doesn't work for me as it would have to be very loud, but might help your someone else to cope.
I have tinnitus and was diagnosed with hearing loss after a serious illness but before I was diagnosed aspergers. I think the hearing loss was a misdiagnosis. I just can't filter noise so everything sounds loud and I can't pick out the conversation. The hearing test in the little booth was a guessing game because I couldn't work out whether I was hearing the signal or the tinnitus.
Hearing aids made everything more confusing. Technology has moved on so might be better of course.
Sorry, not much help to your friend. Humming to myself is the only thing that helps the tinnitus briefly.
So, my opinion is essentially very similar to what you say, but also I think that a kind of feedback loop can cause a sound or something to kind of just be wired into your head all the time.I have tinnitus myself, and I really do try to help make it go away--- I am revamping my health and have been for years. Oddly enough about 6 months ago for maybe a week my tinnitus stopped virtually completely, and I had no idea why. I didn't noticed whenever it came back, but it is back now. Not to say that isn't apart of the healing process- mine isn't so severe it bothers me, it's just there at night and really quiet places.If I had a suggestion for them, I'd say really a mental application would help. I think that honestly the approximate issue is a mental one no matter what way you look at it, so a hearing aid would help for maybe one reason being it helps you feel like what you hear is appropriate/makes you comfortable. (hard to describe what I'm saying in words...)Your friend may not like to hear it, but I'd tell them to try to actually relax and listen to the sound. Become comfortable with the noise and maybe even try to appreciate it like a ...I dunno, song, or waves. And get them to relax into the noise, is what I am saying. If you beat the noise away, you may not break the connections your brain has made--- it is hard for the brain scientifically to break old connections, but easier and intuitive for it to make new ones (ex, don't tell yourself your old way/self was bad, but make yourself a new better person to yourself)....so relaxing and experiencing the noise, experiencing it in a new way, and "connecting with it" rather than the obviously-not-working trying to "destroy" it may make a difference.If you'd show the comment to your friend I'd really appreciate it, just because I don't want their opinion about it to be missed. I think if they are willing they might try anything.You can always ask for details if they are interested. I'd be happy to help.Yw, hehe
I had tinnitus after child birth. It was explained to me that I basically lost hearing and the noise was basically hearing blood circulation in my head, which normally is covered by more salient noises in the environment. They gave me steroids and things went back to normal. The point was to get steroids as soon as possible, in my case within 24 hours. The doctor said they don't know how steroids worked in this case, just that they do, they don't know why I became deaf and why steroids helped. I was unlucky, then lucky. Maybe your friend should try his luck with steroids, but fast.
Thanks everyone for your replies & suggestions. He had a private hearing test a few days ago, which showed a slight age-related hearing loss but not enough to need hearing aids. The audiologist suggested the usual things: to try to relax, listen to other sounds, and that it should become more bearable when the brain starts to adapt. Since the day after the test, he has been dealing with it better and is less anxious. He said he felt more comfortable with the audiologist than either of the 2 GPs he has seen about it, so perhaps he was reassured by being told by someone he trusted more that there was no damage to the ear canal or eardrum and that he did not have a significant hearing loss. Sometimes we subconsciously worry about stuff without realising it, which can make anxiety worse and set up a vicious circle with the tinnitus. Hopefully he is over the worst of it.
I have to constantly put some music to ignore it.I had read the same,that is a sign of hearing loss,so i went to specsavers and had my eyes and ears tested.My ears tested alright for my age.This tinnitus got worse after childbirth as well.It gets worse now that i'm stressed. Sometimes when I walk on street i have it and it just stops the other noises(i mean it covers even a pickhammer ,that sharp it is).Do you get that a lot when you are overloaded too?It seems to get this worse bit of if the level of the noise around me is too much..