hi all fellow T sufferers. I haven’t been on here for a while but have been reading all your updates daily. It’s what keeps me saying thank goodness I’m not alone. My T is aggressive and a fight every day to get through the day. Stress , anxiety are what comes with my T. 6 years now. I hardly go out the door. When I wake up in the morning I still feel exhausted. It takes all day for that dread and fear to leave me. My hearing suffers too cos my T is so loud I can’t have a 3 way conversation. I can’t keep up what people are saying and I give up. My noise is a screeching train breaking now I have hissing in with it That hissing started a few months back or longer. I limit myself to have no noise around me daily as night time is torture.
I’m not alone. : hi all fellow T sufferers. I... - Tinnitus UK
I’m not alone.
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White-noise
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38 Replies
•
what did Audiologist and ENT say about yr extreme T? have u seen Neurologist as well?
TinnitusUKPatPartner
I'm really sorry to read what you're going through, White-Noise.
My concern is that some of the actions which you are taking - avoiding sound and being in a silent environment - are making the problem far worse and making you much more sensitive to sound than is helpful.
I would have to agree with Suz26's question - have you seen an audiologist since your tinnitus began and what recommendations have they made about it?
hi pat and Suz. Yes Iv seen neurologist and ent My mri scan shows severe T with chronic migraines. Iv had T for over 6 years and it was my very very crowded call center with cheap equipment and stress. I’m from Scotland and my doctor has T his Dad had T and Iv been to tinnitus clinic at my hospital. I know about living in a silent world. I know it makes it worse. I have a 3 year old granddaughter and see her every day and the noise of toys and play do help me get through my day. I have a big family so FaceTime has been used. But at night my ears scream. I’m on sound therapy have been for long time now. I listen to white noise to sleep and it plays through the night. Summer had put reactive T. Something loud makes my ears scream louder as well. So pat and suz I hope this has answered your questions.
• in reply toWhite-noise
How does your mri scan show severe T?
White-noise• in reply to
I don’t know that. It was ent surgeon that said it. I can only imagine the mri showed lots of activity in the brain when that part of the brain should be showing no activity especially when your lying down relaxed when getting mri.
• in reply toWhite-noise
There isn't a way of showing that you have Tinnitus yet. Though there is research trying to get too this point.
T is brain damage. Have you seen the loud silence on you tube. Family member seen it years ago and I also watched it years ago. I have been to a T conference in north of Scotland and met the 2 professionals that wrote the book living with T and hypercusous. Iv been with British T association for nearly 6 years. I have the badges saying living with T.
• in reply toWhite-noise
Sorry, but there isn't a way to see if you have Tinnitus that's a fact.
I’m on medication from doctor. I know medication can make it worse. I have to sleep I have to eat and look after myself so if taking medication helps me do this I’m taking it. I have suffered insomnia all my life and was always under weight. I am active. I have hypertension headaches I have hyperacusis. Yes I get bad spikes which takes weeks to calm down. I’m wanting to start a support group where I am. My dentist and doctor have said they would send their T patients notes to say support group in area. I also grind my teeth at night and through the day. Night time I wear gum shield Iv felt for years and years I need to help others with T. I want to help others so so much.
I am also, and lust for the reprieve, and how to make that moment minute hour etc. sorry to hear you suffer so badly. No one can compare to that. , well, yes I can understand. I have that self same hiss, maybe not as bad as you, but we never will tell. I certainly agree (and why I tagged it to Pat) and his reply.
To be in self isolation is the negative, you are handling it your way but you must get other sounds to minimalise the effect. When have you gone to a football match, the rowdiness of the supporters, the forgetting for a moment, because you are shouting at players (No swear words pls). I see this as a game, don't put yourself in the way of tinnitus, it will never change. But your attitude to it can minimalise it. I love sea fishing, roaring out the harbour full throttle. The freedom of the sea, the noise of the boat engine, and the breeze on the face. On rare days bright sunshine on my face, yup, that yellow thing in the sky.
Oh did I mention that the tinnitus was drowned by the sound of the engine.
Yes this can be repeated on headphones, but not too loud to damage hearing more. You can do this. Don't fight tinnitus, go along with it.
BTW I have managed 22 years now.
TinnitusUKPatPartner
I would have to agree with what Utdmad89 asks above - tinnitus isn't capable of being detected by an MRI scan, as there is no objective way to measure it. This remains one of the 'holy grails' of tinnitus research, if I'm being honest with you.
There are very few medications which can be proven to have an effect on tinnitus - the medications which are implicated by research appear to have damaging effects on the ear which in turn may introduce the symptom or worsen it in pre-existing cases.
There is a guide to this on our website - tinnitus.org.uk/understandi... - which hopefully should reassure you that most drugs have no interaction with tinnitus.
I’m only going with what a professional told me years ago. I don’t know what mri scans show. I know the scan is to see if there is anything there that’s causing it. I will definitely be looking to see how ent could see severe T and why I was told this. It could have been his own opinion on my T and the state I was in and that’s what he saw. I’m just the messenger. Thank you for your mri scan info Appreciate it. Still doesn’t stop my loud T Again I know there is no cure. I know I have to live with it daily. If you have a stressful and anxiety life the now I know that you need to try and stay stress free and rest. Again keeping people with an option who haven’t a clue at arms length.
Thanks tinnitus ukpat . I have had tinnitus for 5 years I think caused by anxiety and depression. I did not want to use antidepressants at the time as I was told on certain forums that it can make it worse . But at the end I at to take sertraline as I would not be here today. It did help with my anxiety and depression so I think helped with my tinnitus. It's now 5 years later and my tinnitus as gone through the roof . I do have moderate hearing loss in both ears and I suffer with ear wax all the time .so now my anxiety as gone through the roof again so now again on sertraline and I'm glad I saw you're comment on drugs .I need to get my anxiety down to help with the tinnitus. I have ent tinnitus clinic next month I don't know what actually they can do but thanks again.
Tinnitus is totally subjective. There isn't a way of seeing if you have it. Might be able to show you are in distress by an EEG. But tinnitus can't be measured in any way other than the person's description.
Suz_2• in reply to
I notice on yr profile u have had loud T since last Oct - have u found that sound therapy helps you?
I had to learn to listen to white noise. My doctor and tinnitus clinic in my hospital in my area advised about listening to white noise. Not loud just enough to see if I can tune into it to give my brain a rest. I need it to go to sleep and play white noise through the night so I’m wakening up to it. The past 2 years it’s been a struggle to listen to it through the day. It’s like my T doesn’t catch it or it seems loud and annoying but at night I still need it. Thank you for understanding. The tinnitus clinic stopped a few years ago now. I told her I couldn’t go out the door and she said that it’s normal and just watch for cabin fever. She was upfront about T to me cos I was down to earth She had it since she was 8years old with a bee buzzing in her ear. She was just over 40 at that time. She knew how bad T is. She was a breath of fresh air every time I got to see her. She was based in another hospital. It’s because of her I’m open about not going out the door. Most days I can’t get ready. It’s always been like that. I honestly can’t thank you enough for understanding. We both feeling the same and have had it just a year apart.
White-noise• in reply to
hi utdmad Thank you for your feedback yesterday. I can know see the ent surgeon said I can see severe T and chronic migraines that he meant what he could see in me and not what he could see in my mri scan. I have to be honest your message was a relief because I thought if they can see damage does that mean I will have future problems with my memory. So yesterday gave me a wee spring. You have helped resolve one of my fears. That’s priceless to me. Thank goodness I only shared that info on here.
hi -yes it seems you are suffering a lot with loud and very bothersome T . Did you find that it got louder and louder over the years - because this is whats happening to me
yes definitely is getting louder. It’s making my hearing worse.
Hi WN. I'm sorry you're suffering. It may be that you've lost some hearing recently. The hissing you mention is often a sign of high pitch loss. It might be worth having a hearing test - as other forums members say. My T got louder as my hearing got worse. I was convinced T was making me deaf until Tinnitus UK explained it was the other way round. Hearing loss was making my T sound louder . Hearing aids can work wonders. I hope you feel better soon.
Thank you so so much for your reply. That makes total sense about hearing loss and hissing. I will phone doctors to see about a hearing test tomorrow. My only one I have had was in 2016. Honestly thank you Your message makes so so much sense. The hissing is high pitched and my hearing is doing my head in. Is that why I’m feeling frustrated when everyone is in and all talking because I can’t hear. All I keep saying is can you say that again. It’s exhausting. Thank you so so much.
I think I might need hearing aids but there so expensive. The only thing I'm worried about is I already hear tvs loud when it's on low as it seems the louder I hear something my tinnitus wants to beat it
Hi Chedders It's not unusual for T to compete with other sounds. Mine does too. I carry hear muffs with me. Hearing aids are free on the NHS. I can see from your post above that you're going to ENT soon.. They'll check your hearing and refer you to audiology for HAs if need be. ENT can also refer you to the hospital tinnitus clinic (if they have one) to help you manage your T . It might be worth asking if they don't mention it. All the best.
Hello,
Yes I agree that you are not alone.
In someways knowing others have this condition is reassuring that what we all have is validated.
I’m sorry you are going through this.
My T is also so loud and effects my hearing. As you describe. I can’t do a three way conversation so you are not alone.
Really hope one day soon someone finds something useful for us all.
Best and take care
G
hi Graham-E. Thank you for being honest on how your T is. I always have to be honest cos this forum is the safe place to open up on the daily struggles with T. The tv is terrible to hear. There is music in everything films, dramas etc. i tried to watch something with my daughter and the music gets louder when something is being said and I keep rewinding. After 10mins I have to give up. I can’t watch tv It’s torture. How are you feeling today.
Hi many thanks for replying.
TV is interesting as the quiet parts are too quiet and the loud parts just hurt.
Today my T seems silly loud because I was woken up by it many times in the night. 1:30, 2:20: 3:15 and 5:30 when I could not get back to sleep with my alarm due at 6:15!
So tiredness and stress are horrible and having both feels too much.
However my thing, as hard as it is, is tomorrow is a new day. Maybe tomorrow someone will find something to help us all.
Best G
your spot on about the tiredness and the wakening up at those crazy. That’s my thing to tomorrow is a new day and your right someone tomorrow could be there to help us. Thank you so much.
I really sympathise with you, especially right now, after a hard t's nigh myself, and by the way, your condition pretty well matches mine (in my left ear that is) except mine's been with me now for 30 years! I'm also sorry to hear that you don't go out much.
The best advice I give myself ( and yes, I constantly tell myself what's best to do to snap out of it-thinking about t that is) is to keep busy. Maybe I'll challenge my self to go for a walk knowing that, sometimes, this drives my t level higher for a while- but knowing too it settles down again after a while. Socialising can be tricky because you don't know how you'll be on the day. But I go ahead anyway and I'm surprised how often everything works out alright and glad I made the effort.
I wish you all the best.
I do what you do , I push myself to do it. And it is great when you meet people you haven’t seen for years. I get so excited I think I can do anything i feel so good but then my ears scream at night and in the morning louder and I feel exhausted. I have done days like that to say to myself snap out of it and I push myself. I have ear muffs too. I have a cheap MP3 player with 10 hours of white noise I used to wear all day when out with my sisters. The now my ears not liking it through the day It might be because of the new hissing noise. T clinic said listen to another sound gives you a break from your own noise. You need to sit or lie down close your eyes and find a noise that feels good. Only have volume low. 30 years of you having T is heartbreaking as back then no knowledge or help was there. How did you manage it all.
Sounds similar to mine, although I have differing frequencies in each ear. You're right, it stops joining in conversation and subtitles have to be on the tv. I have hearing aids, as am very hard of hearing. Tinnitus is not curable and impossible to get used to, but you are not alone. I've found different methods of distraction help a bit; having pets helps enormously. I have a Playstation which is a great distraction and you can find games to suit all tastes and ages. Hope some of this helps. Take it one day at a time and keep posting.
hi 27mm thank you so so much for your support. I’m so glad you understand trying to keep up a 3 way conversation. It’s impossible. It’s exhausting. I’m so so relieved I have you all and you all a message away. My family is big so when we go to my mums some talking some watching tv and some playing videos on their phone and my granddaughter toys all in the living room. Getting to the living room door to get away from the noise and I sit out the back to calm myself down. I do my breathing exercises to calm down.
I also had that trouble early on in my tinnitus journey. If it was not a one to one conversation, then everything just sounded like noise. I couldnt pin point a voice it seemed. This, over time, got easier for me as i started to habituate to the tinnitus. As you say, its exhausting.
your message is like Iv text it. Your spot on. I can’t pin point voices. Thank you for your feedback. Appreciated.
I know a day at a time.
Hi White Noise,
Sorry you are going through this.
I don't have much advice, just to tell you your not alone we all are with you.
I'm trying to still work out how to cope with T which started in September.
Talk, we all are here for you 😊
Sending virtual hugs to you 💜
Thank you so so much Ravks. I’m so glad I have all of you for support.
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