New here, could use some advice: Internet help... - Tinnitus UK

Tinnitus UK

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New here, could use some advice

NinjaBeaver profile image
12 Replies

Internet help forums aren't usually my thing, but I'm starting to get pretty down about all of this so even if it's just a bit of encouragment (to do what I don't know) I'd appreciate it.

Tinnitus... I've had a little bit on and off over the years, usually because I've been yoiking a cotton bud around my ear canal after a bath (I know, don't judge me!). But in the last 7 months it's been unbearable. A bit of background:

Last November I fell down our stairs, slipped on the first step, rolled dramatically down to the second corner hitting practically every body part on the way and came to a screeching halt by cannon balling head first into the wall. Our house is a Victorian stone terrace, they made them solid. A bit too solid, if you ask me. The head injury was... bad. Somehow I didn't crack my skull but my scalp split like a melon. Sorry if a bit too much info but it's kinda important. The healing process has been slow but externally everything looks OK. Perhaps that's why I can't seem to get any help from the GP/ENT.

I have high frequency tinnitus, it seems to vary from 5500-7000hz. Sometimes I get a bit of a break and it dies down to tolerable levels but right now I'm in a 3 week spike so loud I can't hear terribly well. The ENT ... well I spent more time in the hearing test than I did in the specialist's room. He pretty much dismissed my head injury, told me it's nerve damage (ear canal clear, bones fine etc) and then declared "It's your age". I'm 56. 😐

I'll be honest, it's a bit scary. When we were able to clear my head and I had the staples and stiches out, we found that the wound had actually split off to the other side of my head as well and it hadn't been cleaned or treated at A&E. I think it must've been a huge contusion that split after the event. I haven't had an x-ray or an MRI and I worry a lot that there could be something really wrong in there. I've brought this up with the GP but she says I'm fine (follow my finger, look left, look right etc).

Should I be more assertive and press them about it? I'm kinda jumpy as my family has a history of strokes and my grandfather died of an aneurysm.

I've tried notch therapy apps, breathing exercises etc. Mindfulness isn't really my thing (anxiety is though). I find I can sort of cope with it if I have my bone conduction headphones and chillout music on but it's so loud right now... will it lessen over time? Has anyone experience of head injury induced tinnitus. I feel so lost, the HCPs all seem to think it has nothing to do with my head injury but itstarting 6 weeks after my fall can't be a coincidence, surely?

Sorry for the wall of text. I always tend to over explain everything..

Cheers

Sarah

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12 Replies
Fruitandnutcase profile image
Fruitandnutcase

Sorry I haven’t had head injury induces tinnitus but I know exactly where you are coming from with regard to the ENT consultant and your doctors.

It’s a very long story and the tinnitus is only a small part of the problem but I’m having similar problems with my left ear although the very hostile and combative doctor I spoke to at my surgery (I felt like she saw herself as guardian of the practice budget whose job it was to save having to spend anything on me) did eventually actually ask if I had ever had a scan which I haven’t and grudgingly said she would refer me back to ENT and tell them to look again. Considering it took almost a year from when an audiologist doing microsuction referred me to ENT via my doctor for something she had seen I’m not holding out much hope.

Like you I would agree your terrible head injury is very likely be what has set things off - why can’t your doctors see that as a possibility? Although could it be any sort of drug you have been taking since your accident? I know my tinnitus got even worse a couple of weeks ago when I was prescribed antibiotics for diverticulitis. Unfortunately I’ve had it for so long I can’t even remember what started it.

I know it’s hard to do but I think you should probably be a bit assertive and push for a scan. I only got re referred because in the end I said quite nice.y - not aggressive.y at all ‘Well if it’s not A as you say and it’s not B either then what exactly is causing the problem?

PS - I found this link if it is of any help to you joinoto.com/articles/tinnit...

NinjaBeaver profile image
NinjaBeaver in reply to Fruitandnutcase

Thank you for that link, that's probably the most helpful thing I've read so far. I'm mystifyed by the GP/ENT to be honest. I had so many things that they *did* put down to the head injury/fall ... back pain, dizziness, even edema in my legs that hung around for a few weeks and caused ulcerations. I saw a locum just after it happened and she warned me about post-concussion syndrome, and tinnitus can be part of that. I wish she was still at our local practice.

I haven't had any drugs. The hospital gave me 3 days of antibiotics and I've gone through a huge amount of paracetamol but that's it. They did offer me antidepressents but I'd prefer not to.

Fruitandnutcase profile image
Fruitandnutcase in reply to NinjaBeaver

Wise move. I always say there is a difference between being depressed and finding your medical care or lack of depressing. Good luck with it all.

Happyrosie profile image
Happyrosie

ninja, regardless of the cause you now have tinnitus. You are in the right place here. There are Facebook forums and I’d advise you to steer clear of these - doom and gloom.

Your doctor is in the majority in that they are dismissive of tinnitus. Sadly. The pathways recommended to them by NICE (National Institute for Clinical Excellence) are viewable by us mere non-medics - go to their website and input “tinnitus” to search box at top.

There are some suggestions I can make as to your next steps. Firstly, to absorb NICE guidelines to see if there’s anything there that helps you. Secondly, to go to the website of Tinnitus UK. Written by people who know what it is and suggestions as to approaches. Thirdly, do not believe cures unless endorsed by someone here or at tinnitus UK. They do not exist but there are things that can help.

Many people say that once they find someone who believes them (this forum for instance) it helps a lot. And of course people who have been helped here, where tinnitus doesn’t bother them any more, may not return here as it reminds them of difficult times.

Do let us know how you get on.

NinjaBeaver profile image
NinjaBeaver in reply to Happyrosie

Thanks Happyrosie, the NICE pages are quite a lot to digest. I think I'll have to read them over time. Perhaps fortunately, I'm very wary of a lot of these so-called cures as I'm not financially positioned to start forking out for apps or devices that claim to help. I realise it's something I have to learn to live with. I guess I'm hoping that as my healing continues the tinnitus may lessen over time.. probably a false hope! I don't think I was prepared for how long this injury would continue to affect me, I still get dizzy when I get to the top of the stairs and my head still hurts somewhat. The bone conduction headphones have been a help as I find ear buds annoying and they leave my ears open to the sounds around me.

Rossi50 profile image
Rossi50

Hi so sorry for what you're going through. I haven't had a head injury. Think mine came on due to losing my mum very suddenly earlier this year then an awful flu. I do know someone though who had this with a head injury. Well face really after getting a cricket ball thrown at him. At the start mine was awful couldn't even have a conversation with anyone without hearing it. 8 months in and if I'm engaged in conversation and busy I don't really hear it. Volume is a lot less and I can function normally. Hoping I get back to ehee I was eventually asleep I did have a little T before all this but never through the day just a little at night trying to sleep. Hang in there. Use things that manage it as much you can. I wear a snoozeband to sleep with nature noises. Try to avoid silence. Take care x

Covenette1 profile image
Covenette1

Hi, not much to add to the posts so far, other than I completely agree with Happyrosie…. just knowing you’re not alone and that acceptance is the key really helps. Kim x

Mac-beats profile image
Mac-beats

Hi

Have you tried Tinnitus UK website/help line?

An excellent source of advice \information, you might find useful?

Best wishes

sugarplumferry profile image
sugarplumferry

Hello Sarah - as you adapt to your tinnitus, particularly now, whilst it is so intrusive you might find some sound therapy helpful. There are several apps available but someone here, ages ago, recommended the Sound Oasis apps. The beauty of these is that they have a graphic equaliser where you can adjust the sound to mask the level your tinnitus is at. There are the usual colour sounds and some lovely nature sounds also.

This probably won’t go away but it will vary a lot in intensity and will sometimes be more intrusive, like now. I know it’s easier said than done but the best thing is not to give it the attention it craves. Best wishes

Fruitandnutcase profile image
Fruitandnutcase

I don’t use an app but I bought a tiny little white noise machine from Amazon. Restnature Portable White Noise Machine -costs £15

You charge it like a mobile phone. It has 16 different noises and different volume levels and time settings. I put it on and leave it beside my pillow all night. I can still hear my tinnitus but it is less annoying with the background noise

NinjaBeaver profile image
NinjaBeaver

Crikey, this got more replies than I expected.

Thank you, everyone. I have looked at Tinnnitus UK a little, but not explored too much. I use an app that let me find the right frequency for the tinnitus and it plays notched pink noise through my heaphones. I don't find it really helps, I prefer to listen to chillout music. Keeping myself occupied seems to be more effective than anything else, but that doesn't help at night. I'm a terrible sleeper, I rarely sleep for more than 4 hours at night so often need a nap during the day. Thankfully I'm self employed WFH so I can do that. The upside of being tired a lot is it rarely stops me from sleeping.

Jimbob7 profile image
Jimbob7

Hi NinjaBeaver,

Yep, my T was caused/ un-locked/ un-leashed (whatever!) by a head injury I sustained last April. I was out walking an old disused railway line, slipped down an embankment and hit my head on some old brickwork. I was stunned, saw stars, etc for a few moments and then picked myself, sat for a while and felt ok. Walked home. Had a headache that night, took some pain relief and then, when I woke up the next morning all hell had broken loose whilst I slept and I had severe T, vertigo, dizziness, nausea - which I've had ever since. I'm 55 by the way. I had never had any permamnent Tinnitus before this.

I was taken to A & E by a family member where I was diagnosed with mild concussion, discharged and advised to bed rest for a few days.

After three days the T was so severe I was losing my mind and my GP did an urgent referral to ENT.

At ENT they did th CNN test which I failed and they performed a CT scan which was inconclusive save for showing some trauma to the back of the head/ neck.

The last few months have been a journey through diagnosis by Audiology, ENT, Maxilo-Facial and Neurolgy - all of which have so far been inconclusive.

Here are a summary of their findings so far:

Audiology - some hearing loss in the higher registers (can be age-related)

ENT - Labarynthitis/ Vestibular Neuritis ruled-out. Tinnitus put down to age-related.

Maxilo-Facial: TMJD ruled-out. Some tenderness of jaw muscles concommitant with mild Bruxism but Tinnitus unlikely as a symptom as damage not severe enough.

Neurolgy - CT did not find severe injury that could cause the Tinnitus.

So that is how we are 5 months in.

My T comes and goes. It is carachterized by hissing - not ringing, it's pulsatile, I can hear and feel my heartbeat in my neck and ears. Whooshing noises with heartbeat. I also have crickets chirping noises and some very high squeaks and blurps and chirrups. When it spikes I am given Diazepam to hit the ejector seat for a few days as I find things unmanegeable. At other times the T dimishes practically to zero and I can get on with life - which has slowly and surely almoost completely fallen apart. I have been on Sertraline (SSRI) since April to manage the despair. I daern't come off it as my thoughts can easily go over to the dark side and often do.

I live for the days I wake up and find it has diminished slightly and I can have a go at normality for a day or two.

I have neurolgy on Monday and I intend to pseter for a more detailed CT/ MRI slice of the main injury site and the base of my neck in the cartoid region.

My main research (here and elswhere) leads me towards a physical injury of the cartoid artey and the possibilty that my injury may have triggered Fibromuscular Dysplasia which would present most of the T that I have.

My search goes on . . .

I wish you silence, peace and love,

Jimbob

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