New Sufferer advice

[dannyboy1973]

Hi Everybody

My name is Daniel

I have had to call out for some help or advice from this community please.

I had never thought something like this would start to completely alter my life. I woke up one morning.... and had this "yinggggggg" sound in my left ear... it was annoying but i just thought it was your typical "ear infection" so i took antibiotics .... they didnt help whatsoever and so i started getting worried and sometimes started getting upset with this constant ring so much so i went to A&E (thought eardrum had burst)

They just said its Tinnitus and it will eventually calm down in a few months. Its now over a year.

My doctor said its tinnitus and i have some hospital appointments (but they are 6 months away.

It didnt calm down it got worse an now its so bad the ring seems to "run around in circles" sometimes moving over as if the ringing touches my other ear, but very rare.. its mainly my left ear this sound is located.

I have epilepsy aswell and PTSD, so its a lot going on for me, put it this way if i had a choice to make this particular ear "deaf" i would jump at the chance and say to do it immediately.

Im really really struggling here ....sometimes i go to the park and "scream" with this noise.

just any little help will be appreciated........ i cant concentrate on anything.

At the moment i feel like ive got a Washing Machine on "Full Spin" constantly in my ear.

hope you can give me some advice

Thankyou.

[Ray200]

Hello Danny. I would recommend investing in a good pair of wireless headphones to mask the sound. For me, I needed a break from T, at least when at home. A break is something to look forward to, and we all want some of that.

I have a Hi Fi set up. Radio coming through the speakers, which I can hear through the headphones, and what comes through the headphones themselves a split second later. Add on the T and that's 3 noises. The brain is engaged on the 2 radio noises and tries to 'make sense' of the small time lapse (combining the noises) and the T gets left outside, so to speak. There it is - the way it works for me.

[dannyboy1973 in reply to Ray200]

Hi Ray

I have been thinking about this, and im just worried earphones will make my T worse.... i think thats great advice .... yeah thanks Ray

[Gib63 in reply to dannyboy1973]

So long as you don't have the volume more than the tinnitus, otherwise the tinnitus will just increase in volume to compensate. I use earphones and use a good app that you can mix nature noises, rain, thunder or fire, as well as waves crashing etc. (Beltone) I find this helps. When it really gets bad I use my VR headset, has meditation etc which is so immersive that too gives me a break from my constant 24/7 high pitched tinnitus in both ears. I wear hearing aids to help which are Bluetooth so can connect to Beltone or music apps during the day. Just a few ideas for you that have kept me sane. Take care, you're not alone 👍

[dannyboy1973 in reply to Gib63]

Hi Gib

Such good advice about earphones/app etc

I haven't researched the medication thing, i think im looking on here more i think aswell about this.

Its such good info, thanks.

[Gib63 in reply to dannyboy1973]

Cheers, good luck mate 👍

[TinnitusUKPat Partner]

Hello Danny. Sorry to read that you are struggling.

It isn't unknown for people with forms of epilepsy to experience tinnitus - the reasons for that differ from person to person.

From what you're describing, there seems to be a clash between noticing the tinnitus and your concerns about it - that's normal, but it may be what is putting a roadblock in the way of you feeling some relief.

Sound enrichment, which Ray200 mentions, is a good distraction strategy when you're at home - and there's a guide to it on our website: tinnitus.org.uk/support-for... is a section which includes lots of practical, self-help things that you can try out to build up coping mechanisms which will hopefully reduce the distress that you're currently experiencing.

It does get better.

[dannyboy1973 in reply to TinnitusUKPat]

Hiya

Yeah the music (Headphones) im definately going to try.

thanks for all your advice

[dannyboy1973]

My situation is kind of complex

But what scares me is that just 2 years ago, i developed Epilepsy "it just came out of Nowhere

The doctor said it was a previous brain injury.

I was diagnosed with an abnormality on My Frontal Lube in my brain... This is on the left side of my head (Where the Tinnitus Is !)

My situation could move in so many directions ... on this T i suffer with and the cause, but probably everyone including myself would see all signs of the two "relative" conditions being linked to a previous "Brain injury" (which could of even happened as a child)

All of this scares me to say the least.

But i know its all early days still, so i need to go down the route of the "process of elimination" medically.

I suppose the main focus i have right now is learning how to cope better in the meantime, and im glad i reached out on here.

[Beesmac]

Hi Daniel

I remember being in your situation when my tinnitus first started just over 3 years ago. Mine started during Covid and I so badly needed help and didn’t know which way to turn. I went through every emotion imaginable. It’s a pity your appointments are still six months away but hopefully, just knowing there are thousands of us coping with this horrible infliction will help you. You will learn to cope with it but it does take time, read all you can on the subject and although it is hard, try and not let it stress you out as this only makes it worse. Good luck with everything and remember you are not alone x

[Bellyboo]

Hi Danny. I think it would help if you spoke to somebody whose been their & gone thru it. If you can get your phone number to me I will be happy to talk you thru it? Alternatively phone Tinnitus UK…. You need a one to one talk.

[Comeonyouspurs]

Try notch therapy,there is a free site through google search.It gives the sound closest to the noise your experiencing then gives you a masking sound to play through your headphones.Good luck,ive had tinnitus for 15 years and gets worse if i have alcohol especially red wine,you just have to programme yourself to live with it,and supplements or expensive treatments are a con.

[PimplePopperfan]

Hi Daniel, sorry to read this. Mine started just like that. Without any previous problems. I never forget waking up at 2:50 am to the screeching noise. The only thing was different I had the covid jab four days prior and had a very bad headache and temp for two days and then bang! I would agree with the rest of the peeps here. Silence is not your friend now. Try out different masking noises ( the white one made mine worse) I invested into a dyson and have it constantly on. Not as intrusive as the conventional fans and can adjust its noise level. Not cheap though..It is also a process to refocus on the fan and not on the tinnitus. Will take time but does help.

Anxiety makes mine a whole lot worse , when I experience a very stressful situation it does get loud so definitely if you notice yours is affected by anxiety just call tinnitus uk and talk to someone, or ask your GP if you can be referred for counselling or samaritans. Anyone just don't hold it in. Anxiety UK is also good. It is a brain disorder so making an ear deaf won't sort it. Hopefully yours will be driven by a condition which docs can diagnose and cure but in the meantime just try to find strategies to make it easier for yourself.

[dannyboy1973 in reply to PimplePopperfan]

Thank you.... yeah my T kicks in about 10 minutes after i wake up,

[Aesop2]

Hello Danny!I too woke up one morning with screeching like a train whistle . Its now been a year . In those first days I remember how I thought it was coming from my ear . After 2 months of using headphones to try and drown out or cover up the noise I finally sought medical help . MRI showed no brain tumors or abnormalities. I have come to learn the sound is coming from the auditory nerve which has been damaged somehow . I had a pretty bad bout of covid 3 months before the train whistle started . In any case I was beginning to feel increasingly desperate. My dr prescribed klonopin for sleep . It did not help at all except to make me feel exhausted . What has helped was being fitted with phonak hearing aide that emits a hissing sound . It was programmed by an Audiologist after she did a hearing test and identified the exact hertz and decibel of the sound . This helps tremendously . My advice is find a good audiologist . Not an ENT DR!

Seek help and encouragement from us here . There is hope and you will continue to "learn to live with it " honestly I remember hearing that and thinking " hell no f ing way !" But you must and you will

We are all here for you

Kindest regards

Aesop

[dannyboy1973 in reply to Aesop2]

Kind words aesop, really appreciate that.

By the way, what Phonak hearing ,aids are they (is there a particular model) please ?

[Aesop2 in reply to dannyboy1973]

Hello sorry for late response My hearing aid is a phonak L-50 R (right ear ) it has a custom tinnitus program that can be adjusted via wifi / Bluetooth by my Audiologist . As I am slowly losing my hearing in the right ear she has had to make three adjustments to the program in order for me to continue to hear the hissing noise it emits . Sometimes she can do it over the computer wifi via the Bluetooth connection and the other times she had me come to her office .

I am extraordinarily tired lately and its not normal for me . I think my brain is exhausted. There are some very interesting studies being conducted here in the states . I am glad people are beginning to have some curiosity around this tinnitus bullshit

Regards and keep looking for answers

Aesop

[Peacely]

I have tinnitus too It's going on over a year now as well.When I wear an earplug in, it diminishes the sound.They sell discrete ones so nobody can see it calked Loop ear plugs.I thought it really helped.

[dannyboy1973 in reply to Peacely]

Hiya

With music/audio or without please ?

[Peacely in reply to dannyboy1973]

No music, no audio. It just dampens the sound. It's literally just an Earplug.. you can take it out at. times where you need to hear Everything like when driving. But when tinnitus starts to get on your last nerve. I find that putting my loop ear plug in it dampens the sound and makes it more tolerable.. These earplugs are sound canceling.It's not just like one from a hardware store or wal mart you have to order it on line, it will not cure tinnitus...$40 ear plugs. What I'm growing to understand is tinnitus is in the brains interpretation of sound so the better your brain health isthe better your tinnitus is the quieter your Tinnitus will be.