Epilepsy - misophonia?

[ThatCurlyGirl]

Please bear with me - sorry it's a bit long!

I have been diagnosed with epilepsy fairly recently as an adult, following a car crash that caused brain damage in addition to lots of other injuries.

Needless to say it's been a shit couple of years and very upsetting having seizures and dealing with the aftermath. Am getting my life back together and starting to work again, which is brilliant and my meds are reducing the frequency of tonic clonics.

But I feel like I keep getting strange new symptoms that feel silly to bring up in the grand scheme of things - I feel I should be grateful I didn't die and don't want to use up any extra NHS resources (will likely have to have an op on my brain in the next few years).

Recently I've been experiencing almost revulsion at certain noises, they make me have very short jerks and I make a sort of "ugh"/wince type noise - it's totally out of my control and very acute.

It sounds exactly like something called misophonia that I've read about online.
Has anyone ever experienced having misophonia after a head trauma? If so can it be helped or will I just always have this skin crawling feeling at certain noises? Worst is people's lips smacking together a bit when they're wet, or anyone licking their fingers, swallowing etc

Sorry for the rambling post j just feel like the aftermath of the crash is absolutely neverending x

I've asked my dh to read your post as he has had epilepsy since a motorbike crash in his early 20s but he's not experienced anything like this. I would say keep notes of anything strange like this and report to your dr or consultant in case it is important. As you've experienced brain trauma I would think unusual things could happen as a result. Make sure you are seeing a specialist. My dh goes twice a year to the epilepsy centre in Chalfont St. Peter which is an off shoot of the London neurological hospital where they have specialists and all the up to date mri scanners. It may be worth getting referred to get the best treatment in the long run. I wish you All the best.

I agree, this is something your consultants should know about. It could be a coincidence, but it might not be.
Good luck OP.

Thank you so much for both coming back to me :)

I'm at the Chalfont centre every two weeks at the moment, they are brilliant aren't they? We are so lucky here to have the NHS - I know that it's rubbish in some ways but my god they've saved my life alone ten times over!

I'm there a week today I think so I'll bring my notes and that I've written this in them. It's typical, the type I have makes my short term memory shit so then I forget to mention how shit my short term memory is 😂

Plus side I've worked three 10+ hour days in a row (I work for myself so can be a bit flexible) for the first time since the crash and haven't had any seizures for two nights so let's hope I have another fit free one tonight and the tide might finally be turning to getting it under control.

Thanks for coming back to me it's a terribly lonely condition as it's really almost impossible to articulate some of it and you struggle to put pieces of information in an obvious order so get confused a lot.

I've gone into LOUD I AM OK ARENT I DOING WELL JOKEY mode when actually some days it's really fucking shit, I'm confused as hell and sore right to the ends of my little fingers and toes and have bitten my tongue.

Lucky I'm in a creative industry where the more unusual an idea the better so I seem to still be good at that stuff thank god!

Thanks again for replying and sorry again for rambling xx

You seem to have a good attitude to what sounds like a really shit situation. I'm glad you are under Chalfont as they do know what they are doing and there are a lot of new meds coming up all the time as well as surgical procedures that can help. I hope you find something that works for you. Best wishes.

I have epilepsy and luckily for the past 15 months have not had a seizure and am hoping to start driving again after 14 years of not.
BUT I do get this revulsion of noises. I've tried to explain them to my Neuro and they just look at me

I also have severe migraines and I don't know if it's more related to them than the seizures as they all came on at the same time TBI. But I still get the migraines though not as frequently now I am on better meds that are controlling the seizures and migraines much better.

But certain tones, hums, vibrations will make my head feel like it is about to explode, my stomach lurches and I feel a cold sweat and sometimes have been sick. I have searched the internet for years for someone who has felt the same way but never found anyone.

Oh @complicat3d! I feel like I've found a kindred spirit!

HUMMING. One of the worst too! And tutting. Sighing. It's kind of noises that aren't quite enough to be a noise if that make sense.

Even if we are the only two to have this I feel less silly for raising this now to my neuro so thank you - if they come back to me with any thoughts can I PM you in case it's of help to you too?

On migraines - I get a specific migraine the day I have a tonic clonic usually a couple of hours before (along with a metallic mouth - if you get that ugh). It feels as if it's RIGHT in the middle of my brain as in specifically the middle horizontally, middle vertically, middle from every corner... and like someone boring a hole in it from the inside out.

Feel free to ever PM me if you ever want to vent about symptoms or reactions etc - it's so hard to articulate a lot of it to people who haven't experienced seizures and their aftermath.

Ps congrats on potentially driving that's HUGE! Lovely to hear

@ThatCurlyGirl

Hi, just wanted to pop by and say that my husband had brain surgery for his epilepsy recently so feel free to direct message me if I can help on that front.

His main consultant is at the NHNN in London but also goes to Chalfont from time to time for tests etc.

That's so lovely @WhiteWineAndMagnums and I think I'll take you up on that after my Chalfont appointment on Tuesday - the idea of brain surgery just sounds so terrifying, I forget it's fairly routine I guess for the surgeon in the grand scheme of things.

It took me so long to recover from my shattered arm operation after the crash that I just can't bear the thought of another surgery, but I know I should woman up and be grateful we can have brain surgery on the NHS, we are so lucky.

I don't want to say it in case I curse it but I haven't had any fits for FIVE days and nights!!!! For first time since June 18 when they started.

On a mix of lamictal and clobozam and the moment, maybe we are getting there even if it's painfully slow!

Thanks for being so kind I really appreciate it

@ThatCurlyGirl

Honestly - it was NOWHERE near as bad as we thought it would be. His seizures weren't frequent but were severe when they happened.

There is a great FB group that is for Brain Surgery for Epilepsy - will give you details if you message me directly.

You're so right - the surgeons do it all the time. They don't however become blasé about it - they take every case seriously and understand what a huge decision it is for people.

One of my friends also had similar surgery and is now seizure free a year on from surgery (her brain was damaged from meningitis). It's definitely worth being open minded about surgery and keeping in mind it's honestly do-able - scary none the less - but it's a very very positive option for many types of epilepsy.

I would wholeheartedly recommend the NHNN - they're world class experts and you honestly can't go anywhere better. Ask for a surgery referral - you can find out options and they ask you right up until you go down to the theatre whether it's still what you want to do so you can pull out at any time. Brain surgery can be life changing - for the better!

Thank you. I am very excited but trying not to get my hopes up too much until I know for sure.

I was having seizures weekly, daily at times until I found the right medication. There are hundreds of combos. I don't know what your life plans are, the lamictal stands out as possibly still wanting (more?) Children??
The meds I took which are ok to become pregnant on were not great at seizure control. Once I was able to take those that were contraindicated in pregnancy I had better seizure control. So if you're not wanting more children I would get onto a better drug asap. If you are there are better drugs waiting x

I also have other health issues and on other medications so i did drag my feet a lot while switching epilepsy meds because they did work - seizures 1 p/m rather than daily. Then I decided to change them up and went through a pretty crazy time feeling quite ughhhhh for ages but have at the other side found topamirate which is controlling my seizures and migraines really really well.

So there is hope at the end of the tunnel. While it feels like forever it's only been a few years for you and unfortunately this is an illness that can take some time to get the right balance.

Head injuries and epilepsy can both have disordered hearing as symptom or side effect. When I was having tests with respect to my own hearing I was looked at for epilepsy, brain damage and brain tumour among other things.

I was 'lucky' in that there was nothing else going on, but both misophonia and hyperacusis (which I have) can be triggered by brain injury.