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Original poster

Misophonia

38 replies

EatGrapes · 16/02/2023 22:25

Was hoping for advice from anyone with experience having a child with misophonia. My Dd (12 yrs) is getting progressively worse tolerating certain noises. It first started when she was around 9 years old, but didn't really impact her daily life. For the past couple of years I fear it is getting progressively worse and I don't really know what, if anything, I can do to help.

Examples of how it is causing issues:

In year six the teachers allowed her to sit in the hallway for exams, this was because the classroom was too quiet and therefore the sound of pens scribbling, people breathing etc. was more noticeable and the teachers noticed she was visibly distressed.

This year she has refused to go on a school trip as the thought of sharing a room with people and listening to them breath was too much.

She spends most car journeys with her hands over her ears to block out noise of other occupants.

In a cafe yesterday I noticed she was involuntarily twitching at the noise of people eating.

I have to say she is very good at trying to deal with it herself, she takes herself out of situations, wears headphones or earplugs and seems to understand it is something she is dealing with as opposed to people making noises on purpose. She does say the noises make her feel angry.

We haven't yet addressed it properly, mainly because I don't want to make her feel self conscious, but am aware it seems to be escalating and want to look into ways we can help.

Any insights much appreciated.

OP posts:
Haggisfish3 · 16/02/2023 22:29

I would continue offering headphones and investigating white noise headphones.

Original poster
EatGrapes · 16/02/2023 22:35

Haggisfish3 · 16/02/2023 22:29

I would continue offering headphones and investigating white noise headphones.

Thanks Haggisfish3, she does play white noise through her headphones which does help. I'm concerned about the times she can't do this, during school for example, does anyone have a child who has been given permission to wear earphones at school without an official diagnosis for anything? Obviously it would interfere with her hearing the stuff she actually needs to listen to as well.

OP posts:
Teaforme23 · 16/02/2023 22:38

If you haven't already, have a look at flare audio.
I don't have a personal review of them but there's some decent reviews from others.
I have misophonia, awful thing to have.
Sending lots of strength and support to your daughter.

xyz111 · 16/02/2023 22:41

I would get her to the Gp. Not to make her feel something is wrong with her, but to try and find solutions to help her. It sounds awful.

xyz111 · 16/02/2023 22:41

xyz111 · 16/02/2023 22:41

I would get her to the Gp. Not to make her feel something is wrong with her, but to try and find solutions to help her. It sounds awful.

Absolutely no pun intended there Daffodil

Original poster
EatGrapes · 16/02/2023 22:43

Teaforme23 · 16/02/2023 22:38

If you haven't already, have a look at flare audio.
I don't have a personal review of them but there's some decent reviews from others.
I have misophonia, awful thing to have.
Sending lots of strength and support to your daughter.

Thank you Teaforme23, we have tried those and she said they made no difference unfortunately. I tried them myself and couldn't tell what they were supposed to be doing, just felt like a normal earplug to me.

OP posts:
Original poster
EatGrapes · 16/02/2023 22:46

xyz111 · 16/02/2023 22:41

I would get her to the Gp. Not to make her feel something is wrong with her, but to try and find solutions to help her. It sounds awful.

😅 it is a good pun though! I think I might, it's so tricky, I'm worried about making it into a huge issue, but then it looks like it could be heading that way anyway. I'm just not sure what a gp could do to help.

OP posts:
Teaforme23 · 16/02/2023 22:48

@EatGrapes I wish you all the best with finding something that works for her.

Original poster
EatGrapes · 16/02/2023 22:52

Teaforme23 · 16/02/2023 22:48

@EatGrapes I wish you all the best with finding something that works for her.

Thank you 😊

OP posts:
catfunk · 16/02/2023 22:59

Have you tried loop earplugs ?
I must admit I wear my apple iPods a lot on Mc mode when I'm at work and out and about.
I'd push for a formal diagnosis then the school will be able to assist more and make adjustments for exams etc.

catfunk · 16/02/2023 23:00

Sorry *NC mode (noise cancelling)

Perry34 · 16/02/2023 23:03

I love my noise cancelling airpods but they are pretty pricey to lose

my kid has hyperacusis and has worn white noise devices for years. They look like hearing aids. With a white noise sound ball playing at night, this is meant to help increase her tolerance. I’m not sure if something similar can help?

Original poster
EatGrapes · 16/02/2023 23:05

Thanks @catfunk and @Perry34, I'll have a google for both those.

OP posts:
LovelyDayInnit · 21/02/2023 05:41

I was like this as a child. I am a lot better now. I think stress and anxiety makes misphonia much worse. If that is an issue for your child, I think I would explore helping them deal with their stress/anxiety.

Cantchooseaname · 21/02/2023 05:46

I think perhaps having a name for it, and knowing it is not your fault and that it is right to expect reasonable adjustments can help. It’s not making it into a ‘thing’, it’s understanding the thing that already exists.

Railwayroad · 21/02/2023 05:57

Following this. My 12 yo seems to have it and it’s getting worse. Not sure going to gp will help. What would he/she do?

rexythedinosaur · 21/02/2023 06:02

EatGrapes · 16/02/2023 22:46

😅 it is a good pun though! I think I might, it's so tricky, I'm worried about making it into a huge issue, but then it looks like it could be heading that way anyway. I'm just not sure what a gp could do to help.

Show quote history

Arguably a GP is the only person who could really help. They could refer her to an audiologist and/ or mental health support. It's already a huge issue, look at the impact it's having on her life. She needs some proper support, not just headphones.

mum11123 · 21/02/2023 06:05

Just as a bit of hope I was the same as this age 10-15. I grew out of it I think.

freckles20 · 21/02/2023 07:03

I struggle with misophonia, mainly around noises of other people eating. I cope pretty well these days but in the past it has been really tough.

OP, I wanted to mention how helpful it has been to me to be able to be open about this to friends and family, and to receive understanding and support.

The effort of trying to hide it, and the feeling of shame that it bought me was incredibly hard and caused additional anxiety and avoidance of certain situations.

I appreciate that you don't want to inadvertently make this into a "thing", but from your DDs POV it is probably very much a thing already- and a thing that is upsetting and that she has no conscious control over.

I think that Acknowledging that this is currently part of her, that it isn't her fault, that you want to help her, and that she doesn't have to hide it will be a huge relief to your DD. This approach may well help reduce the anxiety that she feels around it, as well as the avoidance behaviour and reduce the impact that it has on her mental health.

Your GP may not be able to provide help directly, but they are the first port of call in being referred to the right professional. Taking DD to the GP will also show her that you care about the affect this is having and want to advocate for her.

Mxflamingnoravera · 21/02/2023 07:07

I have misophonia, it started when I was about three years old. I went to occupational health in my last job because the sound of keyboard banging and clicking and slurping of coffee was making my life miserable. He had never heard of it, I had to present him with the information. He had nothing useful to suggest apart from the things I was already doing (headphones). I feel for your daughter but I fear the gp may not be much help.

ReedRite · 21/02/2023 07:11

She needs therapy to help her learn how to deal with stress and anxiety and retrain her response to noise, so it becomes normal again. Headphones etc help in the short-term, but do nothing to improve the condition.

Have you had her hearing checked? Just to rule that out as a cause?

MyGhastIsFlabbered · 21/02/2023 08:16

I'd be very interested in any suggestions. DS2 is 10 and is really struggling. He has recently been diagnosed with ADHD and we're waiting for a formal autism diagnosis. He can't cope with all sorts of sounds, has complete meltdowns and it's really draining on all of us.

Haggisfish3 · 21/02/2023 11:48

People can wear headphones as a permanent solution. If it’s stimulatory overload, a person is unlikely to learn to live with it. You can get very discreet in ear ones now.

RedSoloCup · 21/02/2023 12:43

Following as my 16 year old has this and it's getting worse. We were hoping to stop some of the headphone wearing as it seems to be making them less tolerant but I'm now wondering if this is the wrong thing to do?

ReedRite · 22/02/2023 00:32

RedSoloCup · 21/02/2023 12:43

Following as my 16 year old has this and it's getting worse. We were hoping to stop some of the headphone wearing as it seems to be making them less tolerant but I'm now wondering if this is the wrong thing to do?

Yes, it’s likely to lead to less tolerance of noise, not more.

For somebody NT, noise tolerance can be regained and sensory overwhelm can be much reduced or eliminated. I wouldn’t personally settle for permanent headphone wearing because of the huge restrictions this places on life.