Misophonia

[Floridadreams]

Originally Posted by Cuxi

I think we all suffer from this to some extent maybe not acutely but endless repetitions of something annoying would elicit expletives from most people.

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It’s much much more than that though. It’s not just annoying noises. It elicits an irrational rage and in some cases it’s even just the anticipation of the noise that can bring on the response - that is the key difference with Misophonia. It’s an immediate flight or fight response that you don’t get from just an annoying noise

[Floridadreams]

From comments on the parent support group I’m in they weren’t too impressed with the way it was dealt with on This Morning - I’m watching it later so haven’t yet seen it. But it seems it may have been trivialised - not helpful for those who are living through it or trying to support our children 😢

[RachelM]

I can not bear clocks/ watches that tick. I feel my heart racing and it's almost like I can feel my blood pressure rising.
We don't even have a clock on the wall at work anymore as it was so noisy ( in my head any way). I take batteries out clocks on holidays as I can't sleep with the noise.

[JoJo88]

I’m so relieved to hear other experiences on here as I’m sure DH doesn’t really believe that it’s a ‘thing’! The rage is unreal, and the things I threaten DH with when he makes certain noises is outrageous! Like saying I’ll stab him in the face or smash his plate over his head or whatever. Of course, I wouldn’t, but it just comes out, and I think it’s a way of getting across how it makes me feel! Like with most people, it’s eating noises, I just can’t bear it. Apples are particularly bad! Lately it’s become bad for hearing breathing too. DS is quite a heavy breather, which drives me to distraction. DH exhales through his nose at night really forcefully gradually getting louder and louder, and I can’t switch off from it once it starts. It’s like sleeping next to Darth Vader. I have to sleep with a pillow over my head! I feel bad for complaining as he can’t help it, but neither can I!

I also can’t stand lots of different devices blaring out at once, so if we’re watching TV, and someone else is listening to something on their phone, I feel really agitated. No one else suffers with it, so they can all be sat individually, with three separate phones blaring out and not bat an eye lid!

People tapping on phones when they’re texting when they could turn the volume down! Grrrrrrrr!

But I’m fully aware the problem is mine and not those making the noises...

[Floridadreams]

Has anyone on here tried Sequence Repatterning Therapy (SRT)? I know nothing about it but a couple of Misophonia sufferers have recommended it for our DD13. Just wondered if anyone on here had used it as everyone recommending it seems to have just started out with it.

[Button17]

I know this is an old post but if anyone has any experience with treatment for a teenager I'd be interested to hear it please.

My daughter was officially diagnosed yesterday by an ENT consultant.

This is good as now we can go to the school so they can allow adjustments in her GCSE exams, which she finds traumatising due to her Misaphonia.

However she also wants to refer DD to a Paediatric Clinical Psychologist in Cambridge for in-ear devises and CBT.

I pointed out that I didn't think our health insurance would pay for it. She said we'd have to self fun and it wouldn't be cheap.

We just don't have any spare cash so are feeling dreadful right now. We only go on one 1 week family holiday a year in the UK in self catering. We've already paid the deposit for this year.

We rarely have take aways or eat out. Never go to the pub, etc. No idea what to do.

I asked about referral on NHS and she said that was an option but likely not be seen until after A levels ( 4 years).

[mariechez]

Originally Posted by Eeyore rocks

Is it noises that seem to be magnified? If so yes! I really want to punch my husband in the face when he eats certain things! 🙄

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Snap

[Floridadreams]

Originally Posted by Button17

I know this is an old post but if anyone has any experience with treatment for a teenager I'd be interested to hear it please.

My daughter was officially diagnosed yesterday by an ENT consultant.

This is good as now we can go to the school so they can allow adjustments in her GCSE exams, which she finds traumatising due to her Misaphonia.

However she also wants to refer DD to a Paediatric Clinical Psychologist in Cambridge for in-ear devises and CBT.

I pointed out that I didn't think our health insurance would pay for it. She said we'd have to self fun and it wouldn't be cheap.

We just don't have any spare cash so are feeling dreadful right now. We only go on one 1 week family holiday a year in the UK in self catering. We've already paid the deposit for this year.

We rarely have take aways or eat out. Never go to the pub, etc. No idea what to do.

I asked about referral on NHS and she said that was an option but likely not be seen until after A levels ( 4 years).

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I think I’ve just commented on your Facebook post in that group I recommended 😂 but I have just noticed that this also includes CBT which I’d missed before.
Firstly, as I said on the other post, the in-ear devices did little for our dd. She initially thought they were good the first night, but after that they didn’t work. We have looked at CBT but at the moment dd has said she’s fine as she is (her Misophonia doesn’t seem too bad at the moment so we are ok with this). It seems though that CBT does help massively from what I’ve read as it is all about coping mechanisms.
We have not had to face exams yet, and you have made me think this could be an issue for our dd when we get to that point.
Try not to beat yourself up about not being able to pay privately for this. A lot of people are in the same position. Explore the NHS route if you can. Or maybe see if you can cover the initial consultation. At least then you can chat to the consultant about your dd’s needs, and if they have any options for public patients - you never know! Or they might know of another avenue you can take.
In terms of the exams, go back to the school with your dd’s diagnosis. Ask them for accommodations to be made - even if it is to be able to wear foam ear plugs. I know that wearing them long term can make it worse, but you’re talking about a specific few weeks to help her through. I don’t think that’s long term.
This is a really difficult condition for your dd, and the whole family, to navigate. We just let dd guide us at the moment in terms of what she can cope with etc. but it can be hard. Good luck x

[Button17]

Yes, thank you so much for making me aware of the FB group. And for excellent advice. It is much appreciated.

[Floridadreams]

My dd is having a really tough time at the moment! She normally “copes” quite well, and it’s usually just at home and particularly eating noises that annoys her. But this week she’s struggling terribly. She says everyone, including the teachers, are annoying her. She ate her dinner alone last night. She has been texting from school today saying she is so tired but says she’s sleeping ok. I don’t know what to do!
She is coming up to 14 and seems to be having a bad time with periods. She has been on for a whole week this time (day 7today). I’m wondering if that is exacerbating the problem? The GP did say she could go on the pill if her cycle/pain didn’t settle, but then when I took her in a few months ago to get it, the GP changed her mind. I must say I’m dubious about putting someone so young on the pill but if it helps we’re willing to try! I just don’t know how else to help her.
Anyone else got any tips for coping in school, without a diagnosis?! We’re in Ireland and I don’t even know where to start with a diagnosis or how that would help 🙈