tinnitus volume: on a recent visit to my... - Tinnitus UK

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tinnitus volume

drumcraw profile image
34 Replies

on a recent visit to my audiologist he adjusted my hearing aids white noise volume as it was too quiet when i got these new aids recently. after a while of tests he tried the level at 80DB and that still didnt mask the T, now i know that white noise is meant to be set just under T and he did reduce it to 75DB but that made me realise just how loud my T is!!!!!!!!!!!! 80DB still not masking it!!!!!!!!!! is this really T i have or something else causing it to be so loud! he also told me not to use it for more than 2 hours at a time in case i damaged my hearing!!!!!!!! i feel so hopeless and depressed as my life has changed so much since i got it 4 1/2 years ago and no sign of it getting better what gets me is the unpredictability of it, never knowing how it will be from one day to the next!!!! my drumming days are set to be over soon as this thing has just taken over me and i cannot find a way to tame it. physical injuries have never stopped me in past from playing or other things you can gwt along with them but THIS, this has me floored!!!!!!!!!!!!

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drumcraw
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34 Replies

Hi Drumcraw sorry to hear your tinnitus being so loud and the way you feel but tinnitus does take over your life and you can't just do the things you once enjoyed I had a bad 2 weeks with a ear infection and my tinnitus spiraled out of control and was on the edge i can tell you my white noise hearing aids i have 4 settings i keep it on setting 1 which is white noise and hearing aid my tinnitus has greatly reduced for a week now and even when i take my hearing aids out at night it is not do loud are you on any anxiety meds? Like ametripalyne which help when you're going through a a bad time if not get your Gp to prescribe some and as many sufferers Will tell you keep busy listen to background noise like the radio or go for walks & keep positive I hope this helps here for you anytime. Davy

drumcraw profile image
drumcraw in reply to

hi davy, im not on any meds for it at all i tried the ametriptalyne but didnt like it so struggle on my own but mine never seems to go down for more than 1 day so every morning i have this consttant battle to try and get it down which i seem to lose more than win i cant sleep without pills its so loud and although i try to keep busy go for wlaks its stilldriving me crazy!!!!! i go to a psychotherapist who says that i am able control it but i dont see in which way oits poss. sadly my g.p. that was excellent has left the practice and the other docs are very ignorant about T, they woudnt even put up a poster for the local T help group! i just feel so helpless and hopeless at the thought of this being in my head for the rest of my life!!!!!!!!!

Xene profile image
Xene in reply to drumcraw

Yay drumcraw, I'm slightly confused as to why your psychotherapist would tell you that you can control your T? I don't think anyone can control their T but then again I don't keep updated on possible new techniques. I'm guessing that he/she was trying to say that you can try and control how you react to, cope with and deal with your T. I'm not a lover of meds and don't take any for my T although apparently they do help some people. For those of us that have it at an extremely high volume 24/7 it is a struggle as you well know but it can be done.

Best wishes

Xene

drumcraw profile image
drumcraw in reply to Xene

hi xene, in a way shes maybe right and its all about distracting the brain but im struggling to find the key to quiten it i dont take any meds except to sleep and i HATE IT but ive no choice as im sure lots know, a big part of my struggle would be helped if my family realised the enormity of T. and understood but im afraid none can!!!!!!! as im beginnig to think my psychologist cant, ive received a c.d. on stress help!!!!!!!!!!!!! she said use it every day but dont use it when T is loud????????????????????????????? so???????????????? not got a clue really!!

Xene profile image
Xene in reply to drumcraw

Yay drumcraw, obviously everyone is different and what they experience with their T is unique to them. You talk about distracting the brain but as it is so bloody loud nothing can distract me from it as I hear it over absolutely everything so I have learned to accept it and live side by side with it. It's not the best but there are no other options.

I often feel sorry for the minority who are desperately seeking 'habituation' which may not come, which kind of leaves them up s*** creek without a paddle! I hope you find something that works for you but want you to know you can live with it and hope you get a bit of a reduction soon.

Over the years I have learned that even if my family could hear exactly what I'm hearing there's still nothing they could physically do to help me with it! Yeah maybe they could be a bit more understanding when my mood is low but it is what it is. Keep your chin up, I've always found that acceptance is easier than trying to fight it but we're all different.

Xene

drumcraw profile image
drumcraw in reply to Xene

thnaks xene

Just to day your white noise is supposed to be lower than your Tinnitus to blend in. Davy

Andy0708 profile image
Andy0708

I am so sorry about this. People only realise how horrid tinnitus can affect life until they experience it to the degree some of us do. Do you have Hyperacusis as well ?

drumcraw profile image
drumcraw in reply to Andy0708

hi andy. thanks yes your right luckily i dont have hyperacusis

Boo153 profile image
Boo153 in reply to Andy0708

Hi. Yeah I have and it's bloody horrible to live with can't sleep with it I have sleeping tabs I have it24/7 what do you do to help your cause I have anxiety. Aswell xx

drumcraw profile image
drumcraw in reply to Boo153

hi boo , sound slike mine sometimes a phone call might distract the brain or other things like trying to keep busy but its a battle i have every morning with it one i seem to lose most of the time try some relaxation cd.s for the anxiety some people take amytriptaline in small doses i dont take anything just try to put up with it! hope you find the key for distracting your brain soon im still looking for mine take care crawford.

I'm sorry to hear your tinnitus is sever and in your head.

You know by how you are coping and how loud your tinnitus is that drumming may have to be stopped for now anyway.

Nortriptaline can help reduce tinnitus for some people and stopped my head tinnitus.

Cinnarazine can help reduce tinnitus at a dose off your doctor 15mg 3-6 aday and helps Menieres.

Keep asking to try meds and give it time to adjust to your aids.

Love glynis x

drumcraw profile image
drumcraw in reply to

thanks glynis. i have nearly stopped playing last gig was 2weeks ago amd ive tried noratryptline to no effect i dont know where to go with this now????????

GDJTAM profile image
GDJTAM

Hi Drumcraw, Your audio guy, does he/she have T? Probably not by the sound if it. These BA, Masters and degree specialist are good at reading text books, the rest is best guess Work! The people on here have T, they have gone through your turmoil and tried various ways to mask their T.

I am also on Amitriptyline and I take 35mg an hour before going to bed. I play white noise on a low setting and it works for me. The T doesn't like you having control over your own brain so, persevere with control habits, try what T sufferes on here do and you will find something that works for you.

Don't let T rule your life, when it gets bad tell it to bugger off and carry on the best you can.

Good luck

Graham

JaneMc16 profile image
JaneMc16

Hi Drumcraw, so sorry to hear you're in a bad place at the moment with the T. Are you stressed about anything else in your life- maybe without realising it?. I can relate to your noise level ... mine never goes away either. My hearing aid is "just" for hearing the outside world.... I don't use it for white noise, and I find that if I can hear the outside world better my T starts to decrease in volume. It's always there - but it means I get some respite and I can get through another day .... one day at a time us all any of us in here can ask for. Interestingly, my sister found she had T for a two week period after an ear infection - she was floored, couldn't cope and decided she couldn't go on. It went away when the ear infection cleared up - two week she had it - I had no words for her because no one was there for me and after 17 years you realise you are on your own. It's your own mental strength that you have to draw on .... did you ever consider yoga? ..... it's been my salvation and I wouldn't be here e felt for the mental strength it gave me.

Keep strong Drumcraw - we are all here for you xx

drumcraw profile image
drumcraw in reply to JaneMc16

thnaks jane, yes i do have lots of stress in my life at the moment with other things which im powerless to change i have to laugh at the sdvice of the pstch. anout the cd for stress though telling me not to use it whjen T is loud??? well its loud all the time so??????????? ill have to do something as feel im going off my head what with one thing and another!

Lindsay6 profile image
Lindsay6

Hi. I empathise( even the duration is the same ) and I hope today is slightly easier. I moved house this week and am proud I gave coped so well and feel positive about it. Unfortunately t has gone up again ( I had my wng on for a bit yesterday and today the t is accomoanied by all higher pitches rebounding / echoing back ). I am getting on with things but t doesn't play ball . If I were not as strong as I am I would weep that after 51 years I have a potential home but tinnitus to cope with . Heh ho as they say x

Angela-H profile image
Angela-H in reply to Lindsay6

Hi Lindsay, wishing you every happiness in your new home. I agree that having T does sometimes take the icing (and the cherry) off our cake. Love Angela xx

Lindsay6 profile image
Lindsay6 in reply to Angela-H

Thanks Angela , as always. House has potential to become a healthy / healing place ( ironically the only since moving in discovered faulty plumbing syesterday emits a high pitched siren I thought was the alarm , goes off if you flush the loo !) . All my external coping with the change seems to be coming out through my ears which now echo sounds back at certain pitches, including my own voice. It's making functioning tricky. I will finally give nortripyline a go . Hope you are enjoying the nice weather 😎

Angela-H profile image
Angela-H in reply to Lindsay6

There's always something else isn't there Lindsay? Hope it soon gets fixed. And, more importantly, I sincerely hope that you do give nortriptyline a go - you have nothing to lose, except perhaps some noise! My T was made worse by a flippin' ukele band in Sainsburys last Friday - the noise was unbearable so didn't do the usual shop and escaped asap, but of course, the damage is done in seconds isn't it? I will have to be more careful obviously. It was the most awful racket I have heard in years - no tune and caterwauling voices. I didn't put any money in the charity box, which is most unlike me. Do hope you're ok Lindsay and no, I don't like the hot weather, thankfully the rain started in Shropshire last evening and continues! Love and best wishes, Angela xx

Lindsay6 profile image
Lindsay6 in reply to Angela-H

How kind and thoughtful you always are. And pain to such a good picture of the sound - if that's possible. Makes me remember my parents not wanting either of their 2 children to learn the violin in the days when schools had musical instruments for all ( not sure him playing the trombone and me the guitar were much better 😊) . Have a cooler day - I am unpacking last boxes , so many books and their associated memories.x

Angela-H profile image
Angela-H in reply to Lindsay6

....... and how caring you must be too Lindsay! I do think we have a very likeable forum here! Let's hope that your new home creates so many happy times that your T is banished ..... ps how did you get yours? Mine was from the stress or anaesthetic of a major op xx

Lindsay6 profile image
Lindsay6 in reply to Angela-H

Indeed , it is a caring and supportive forum , a mixture of empathy and it being ok to share when feeling bad / struggling but also sharing good stories and finding pleasure when others have better times. Unlike some forums , it's not a ' race to the bottom , nor a race to the top '. Mine started when I moved into a house 4 and half years ago - it was so stressful ( noisy road so I was scared of going out , or rather I would run to the car to get to work , see friends etc ) and then inside I had no windows between the dining room or the kitchen and the conservatory in the depths of winter ( literally 22nd December - should've moved on 21st but removal van broke down !) .It was so cold , I had cardboard boxes at the gaps - the irony of this for someone working with homeless people was not lost on me . I have always been noise sensitive , one of the reasons I have moved every few years . To begin with , I though it was low frequency noise syndrome . I have had lots of stress in my life and tinnitus was one I just couldn't handle in my normal way - by avoidance and working harder in everything I did . I got frustrated I couldn't sort it or couldn't cope with it better - especially when ( another irony I guess ) I was training Health Peer Mentors for the NHS , all of whom were supporting other people with long term conditions . Have kept moving and tinnitus increased but now I hope to settle !

Angela-H profile image
Angela-H in reply to Lindsay6

Oh bless you Lindsay, doing so much for others and stress gave you this burden of T. I hope you have others to support you. I never talk to anyone about my T any more. No-one can help, so there's no point. But, I do ease my pain by being with the friendly folk on this forum. Mine has been bothersome since last Friday but we just have to carry on don't we. Hope you have much better times in your new home. Love Angela cx

Angela-H profile image
Angela-H

Sorry to hear that you're not so good at the moment drumcraw - I have read through all the posts from our forum folk here and you won't get better advice, anywhere. Love, Angela xx

drumcraw profile image
drumcraw

thnaks angela xxx

ade-the-pade profile image
ade-the-pade

Hello drumcraw.

Similar comments to above.

Very sorry that things are not going well at this time.

Only advice I can add is to take the meds. No point being a miserable hero. I have tried load and open to trying a lot more. My view is that I may get lucky and one will hit the spot

I have both tinnitus and hyperacusis. Most days I am positive but I hate it when I have to battle through a day. These days sick the life out of you.

I wish that you find some peace. I

Ade

LuverlyLucie profile image
LuverlyLucie

Hi Crawford. I am sending hugs. I really do wish there was a away to stop your tinnitus. I am really so hoping for a cure. Stress does seem to make mine spike so if you have any way to lessen it that may help. Maybe find out if anyone is doing research into tinnitus and needs volunteers to help. Take care. Love Luverly Lucie xx

drumcraw profile image
drumcraw

hi musician12, i dont play as much now usually with the one band which is a9peice with brass and the keyboard player has T as well. they are trying to lower on stage sound but as mines loud all the time i cant really tell if playing quieter is doing any good, im thinking of giving up as the plugs i wear reduce sound by 40% and takes away most of the enjoyment but apart from that i feel that down i dont feel like playing these days and have lost interest hope you find abetter solution cheers.craw.

musician12 profile image
musician12 in reply to drumcraw

Hi craw, 9 piece is a big band, lots of noise. Have you tried smaller set up, say 4 piece?

drumcraw profile image
drumcraw in reply to musician12

mi musician12, funnily enough they are quieter than the other bands ive played with its 2 saxes keys,guitar. bass, and me also 2 girl vocalists and 1 male vocam most 4 piece bands ive worked with are loud on guitar or even 2 guitars and bass, i dont hear the horns much anyway with the ear plugs and only really get keys and bass!

drumcraw profile image
drumcraw

thanks lucy, i dont think theres any trials or tests forT up here in scotland or id be first to volunteer!!!!!!!!! i know about the stress thing and i do have alot of it in my life right now but my T is loud nearly every day!!!!!! and i cant seem to shoft it these days but i keep trying thanks again love craw xxx

drumcraw profile image
drumcraw

thnaks but ive been trying to finda way for over 4 years now but it just seems to get worse right now its raging!!!!! been there all day hope i dont get any calls to play""""""""" cheers craw.

JRDTR profile image
JRDTR

Hi Drumcraw,

Sorry to hear about your struggle. I suffered from T for years. We have different cases I guess. Mine was ringing coupled with ear pain. I gave up on meds. I tried to be positive and still do things that could help me forget about it. First few years were a struggle for me, I learned to live with it but never giving up on finding aids that could help relieve pain.

I wish you well.

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