Tinnitus in Autistic Child

Hello, has anyone experienced tinnitus with an autistic child? My 13-year-old son has sounds in his ear that manifest when he tries to get to sleep. He has always had hypersensitive hearing, and can hear ultrasonic sounds such as a cat deterrent.

The tinnitus started about 2 weeks ago. It stops him from getting to sleep. He says the sound is really loud. He desperately tries to get to sleep, often has a meltdown due to his autism, is awake all night and all the next day. Eventually he just collapses, then might sleep between 4 hours to 18 hours.

Because of his autism, it is almost impossible to manage what therapies to use. He refuses to use white noise apps (I have tried White Noise HD, because there is a drone sound that actually helps me with my hypersensitive hearing at night), and refuses to try other sounds such as music, meditation, etc. He won't communicate any problems or feelings he is having, and refuses attempts to comfort him. All we can do is brace ourselves every night and try to manage the meltdowns.

 

Why are you letting an autistic child with severe tinnitus listen to ultrasonic sounds? Is this a sort of cruel experiment? This borders on child abuse. Lord have Mercy.

P.S. needless to say, throw that ultrasonic cat deterrent out.

 

It sounds like some form of recruitment or loudness hyperacusis.

 

I'm sorry this is happening to your son.

What does he use to self soothe?

Could body based therapies such as massage help him?

 

I didn't say the cat deterrent disturbed him, I said he could hear it. He also doesn't like cats in the garden. He prefers birds. Sometimes he asks for the deterrent to be turned off, and we do that.

Thanks for assuming you know everything about my household, though.

Thanks for the reply. His go-to to help him calm down is to watch youtube videos. Which, I know, isn't great for trying to get to sleep. We've tried ways to reduce his video watching at night, but the resulting meltdowns are not pretty.

I will look into massages, but he hates being touched...

 

At the moment he is awake for nearly 24 hours at a stretch, and sleeping about 5 hours.
He is refusing every kind of therapy or relaxation method we offer.
He's going out of his mind. He is trying to pull his ear off and tear his hair out.
He is asking us to kill him, or to give him a gun. There's no calming him, he's angry and suffering all the time.

GP couldn't offer much help. Referred us to the ear specialist. Ear specialists are not seeing anyone at the moment because of COVID-19.

I don't know what to do. We're all going mad with tiredness and stress. If he doesn't sleep, no-one sleeps, because of his meltdowns.

Thank you for listening. I'm not expecting anything, I just need to vent.

 

The cycle continues. He woke up at midnight yesterday and was awake until 9pm (21 hours later). Managed through the day by taking him out the park a few times. He woke up at 3 am because of the tinnitus and alternated between sobbing and having meltdowns. He is crying "when will it end?"
He refuses to come outside with me for a walk, even though this is the best way to bring him some relief.
I know I should manage expectations but I cannot yet bring myself to tell him this could be long term or permanent.

Managed to another bis of information from him. His jaw sometimes "clunks", so it sounds like he has hypermobility. Maybe this is putting pressure on his ear?

 

He's been awake for 26 hours now. Screaming and screaming. The house is a wreck.

Asked the GP again for an ENT referral and again we got a letter saying it is "routine", that is, no appointments are being made due to COVID-19.

We got so desperate today we took him to A&E. Poor kid patiently waited 4 hours. Eventually a doctor said "there's currently no pathway for tinnitus". My son had a full meltdown there. Complete dead end. No medication to help him sleep or anything.

He's begging for his life to end. I don't know what to do.

 

Okay, we FORCED him to listed to some white noise. He complained for 5 minutes, then fell asleep.

 

Sorry, I need to unload again. We are spiralling into madness. My son has degenerated to the point that he can barely communicate except through loud moans and shouts and spends his waking hours lying down on the floor or in bed. Seems to be worse when he first wakes up. He is refusing masking sounds again. Codeine helped calm him for a few days, but we can't keep giving him that.

He sometimes complains that an ear has "stopped working" which I take to mean deafness, and sometimes auditory hallucinations such as beeping sounds. He got angry with a noise from pair of speakers, even though I had unplugged them from the mains. Every day he says "I want my life to end."

He has been taking 10mg of circadin (melatonin) for a few years now to help with pre-existing sleep problems. It worked very well to begin with, but became less effective, and obviously now it has no effect since the tinnitus is so overwhelming.
But is there any chance that the melatonin is causing or exacerbating the tinnitus?

 

I'm so sorry your son is going through this. I honestly don't have any advice, just that I hope he finds relief.

 

You have my fullest sympathy, it sounds like hell for your family at the moment. Off the top of my head reading what you've put down here I can really only suggest one additional thing that might be worth considering:

About a year ago when my tinnitus had gotten really quite bad again I started to change my diet. I began eating shed loads of spinach, drinking fresh ginger teas, and also drinking fresh lemon water. These foods are quite often discussed in the tinnitus community and eating them did seem to help me, but I can't be sure whether or not the effect was placebo. Having said that, have you considered trying to "placebo-ise" your son with some kind of similar diet regimen? It may or may not work - it may not work long term, but it might buy you a bit of time short-term just to try and get things back on track.

Let us know how you get on.

 

Wow - what a difficult situation.

Here's a few thoughts in case they're helpful.

1) try getting a fan to whirl by his bed, providing a gentle whooshing noise. It helped me when I first got tinnitus.

2) You mentioned that "his jaw sometimes 'clunks'." There is a relationship between some jaw issues and tinnitus, and dentists are sometimes able to help, for example, with a splint. Might be worth checking out.

3) I would find a neurotologist with a tinnitus specialty.

It sounds like there are so many things going on at the same time, that finding relief is going to involve someone with a lot of experience who can look at this in 3 dimensions. The sleep problem is obviously exacerbating everything else, and a good neurotologist should be able to help with that as well as other related issues.

Good luck!

 

I hope things are better for you lately.

 

I'm so sorry you and your son are going through this. My son is not autistic, but has ADD/ADHD. Processed and fast foods really wind him up. What about a low-sugar, no caffeine diet high in fruits and veggies? It might help him calm down, it helps my kiddo. **Have you tried the supplement CALM? It has Magnesium and I take it daily in my water. It's really calming and does make you slightly sleepy. It was a game changer for me during quarantine.**

I can't imagine explaining to a teenager with autism what tinnitus is and trying to help him cope. Hopefully, with time his will improve. Praying for relief soon.

twa

 

UPDATE in 2023

Hi everyone, I don't expect anyone to remember this, but at the end of 2020 I was posting here about my son (13 at the time) who developed tinnitus. He is autistic with sensitive hearing, and we were plunged into chaos as he could not handle the constant noise and was spending 20+ hours awake at a time. Our whole life was upturned and I thought we were descending into hell - especially as our social worker did not believe he had this problem and we were just bad parents who did not keep routines.

I would just like to give an update on how we are doing now.

We sought help for my son - the GP did not help. We took him to A&E and they did not help. Fortunately, he was still an outpatient at the sleep clinic in Sheffield, so we contacted them, and the doctor prescribed him Clonazepam. This was early 2021. We saw immediate improvements. His sleep stabilized and we were able to get back into a routine. He said the noise was still there, but he was able to cope during the day with distractions. Melatonin and Clonazepam helped him get to sleep at night.

Towards the end of 2022 we had a follow-up appointment with the sleep clinic, and my son indicated that he didn't have the tinnitus problem any more, so that's great news.

Rewinding for a moment, at the beginning of 2020, everyone in my household suffered from a horrible flu-like illness that in retrospect might have been COVID-19 - obviously I can't be sure - but throughout that year, we all suffered odd symptoms that matched the "long Covid" symptoms. I had wondered if my son's tinnitus was related - how common is it for a young teenager to have this problem?

Back to present day, autumn 2022, we all tested positive for COVID-19. We're okay now, but what would you know, not long afterwards I developed tinnitus. It is constant, mostly in my left ear. It is ignorable most of the time, but very loud at night or when I am stressed. It just fills my head, like a sort of pressure. I am able to get to sleep with a YouTube channel called The Relaxed Guy and with some Trazodone.

I'm super happy that my son is not suffering with this any more. I don't know if mine is temporary or permanent (probably the latter at my age). I'm not qualified to say what link this has with COVID-19, it could be coincidental.

I will add that one other thing that help him get to sleep was a tower fan near his bed. The sleep clinic did provide a white noise machine - it was about the size of a large alarm clock, with different noise settings - however he didn't like this (maybe the speaker was too small/tinny, whereas the tower fan is more - what's the word - volumetric?)

 

It was 100% the Chinese coronavirus.