don't want to live like this

[wish2heal]

I loved my life always full of fun, going to gym, out with friends, so many other adventures but Last 3 months has been hell, It had freaked out my whole family with me expressing not wanting to live anymore. panic attacks, crying, desperate. It all started with aggressive micro suction by this miserable doctor, nothing is helping

[Ingrid-p]

I’ve been like you for the past few weeks. Had t for over 35 years and for most of that time it hasn’t been that bad. Just a few blips, which my hearing therapist and hearing aids sorted out.

For some reason now it’s horrendous. I had a really bad ulcerated mouth, then GP said I had fluid behind my ear drum and also I don’t think my aids are working properly. Boom tinnitus has taken over again.

I’m having a hearing test on Wednesday and seeing my therapist. I’m hoping new hearing aids will help.

Go back to your GP and explain how you’re feeling. You might need something to get you through this bad patch. I know from past experience that t can be learnt to live with. You get to the stage where you hear it, but it doesn’t bother you. Sounds crazy but believe me it’s true.

Look after yourself, don’t dwell on negative posts on this forum just look for the positive ones.

Take care xx

[wish2heal in reply to Ingrid-p]

Tnx a lot, have seen GP, they don't really understand, given me anti depressants and sleeping pills.

[Ingrid-p in reply to wish2heal]

It’s such a horrible illness 😭

Ask to be referred for a hearing test and to see a hearing therapist. Even a small loss of hearing can be helped with a hearing aid and this in turn helps the t.

Let me know how you get on.

Take care xx

[Lindsay6 in reply to wish2heal]

GPs give them for everything unfortunately - myself and friends have been for a variety of issues / condititions and its the same . It is hard , mine's almost unbearable now and I'm now just getting through each day. I refuse to give in but it's hard - I think we are some of the strongest bravest people . Take care

[Nicu09 in reply to Ingrid-p]

Negative posts on here are unavoidable at times and are a way of expressing ones feelings in a desperate time. That’s the whole point of the forum to allow people to share their feelings at a time when others can have no idea how bad things get. Expressing negativity is a way of getting it off your chest to people who have a real understanding of the hell we go through. This forum is the only means of expressing the horrors of this condition because non sufferers can never understand. I believe negative posts ARE indeed helpful in one sense because not only does it give you a release valve it lets others know that they are not suffering alone

I don’t think it’s helpful to suggest we don’t dwell on the negative posts on this forum because it’s ok to sound off, to cry out, to grieve. It’s ok to express how bad you feel on horrendous days and say openly that life has become unbearable. Some of us are living with a tortuous condition, a condition no one can see that has become so severe it can break your spirit. That is the reality of it and you don’t have to be strong and positive and focus on positive posts and constantly try to habituate. It’s fine not to be stoic and brave every day and if you can’t express your true feelings on here then the forum isn’t doing the job it’s supposed to

Of course it’s pleasing to hear about people who are unaware of their tinnitus, who have habituated or those who have quiet periods but for the most severe sufferers it is often impossible to habituate to the super loud droning and screaming and hissing that permeates every minute of every day that can’t be masked by loud music or tv noise let alone tinnitus maskers

I don’t even like using the term tinnitus to describe my condition because that just trivialises it and implies a ringing in the ears. In reality I hear the droning of plane engines in my head, I hear the incredibly high pitched scream of electricity, I hear a thousand bees echoing around inside my head. I live with torture on a daily basis so I’m not going to pretend to be positive and upbeat when I’m not my condition has got to this point over the past 2 years although Iv had it for the past 10 years Iv turned to this forum to vent my feelings of desperation and whilst my posts have indeed sounded negative, that’s because that’s the reality of it I’m just being honest.

So if anyone wants to post negative comments about how they are feeling I say it’s absolutely fine, share it, shout it we have a right to feel negative

So I sayto “wish2heal” yes I know exactly the horrors you experience every day it’s horrendous, it spoils your life and can break you as a person. But I say as well as reading the positive posts read the negative ones as well, know that others are in the exact same boat as you, share how rotten it makes you feel and do not feel you HAVE to be positive if you don’t feel like being.

Vent your anger your grief your fears and the ones that suffer as severe as you do will get exactly where you’re coming from. I will openly say that I’m sick to death of hearing about bloody habituation, useless tinnitus maskers and then to boot to suggest CBT because “it’s mind over matter “ yeah right course it is!

The only one thing that helps me is reading like minded posts on here from folk suffering like me I read positive and negative posts which I find both equally helpful

[Mrsgoggins in reply to Nicu09]

Of all the posts I’ve read, this one is the one that has made me feel the most relieved and I thought, thank god. That’s how I feel!! I am the person at work who makes people laugh, I take my grandkids out swimming etc. I’m the go to person to organise nights out, meals with friends, lunch dates, started Tia Chi, I bake, go walking, garden, work, did I say make people laugh 😂. But lots of evenings, I lie in bed crying with my pillow speakers playing rain or rivers or even soul music. Sometimes so I don’t waken/upset my husband I go down stairs so I can just let go and sob my heart out. I’ve had tinnitus for just over a year, I had a MRI scan end of last year and they found an acoustic neuroma. Had another scan and found out yesterday it hasn’t grown. Find myself thinking if it had grown there might be a chance they would remove it and the tinnitus might go away. But then you end up with a whole lot of new problems. I’m 53 and had breast cancer at 38 then it came back again at 45. People say I’m one of the most positive people they know!!! I’m trying, I’m REALLY trying but am exhausted being positive and doing the things I enjoy because I can’t keep going 24/7. So basically I’m having a very bad few days, so thank you so much Nicu09 for giving me the right to get it off my chest. Feeling a little bit better now 😬.

[Ingrid-p in reply to Mrsgoggins]

Bless you, it's bloody horrible. Had mine 35 years after bad ear infection. Most of the time it hasn't been a problem, but every now and then it flares up. I change with it. I'm nearly always upbeat, except when my t is roaring. I find it hard to get out of bed in the mornings and then I can't wait to go back to bed at night. I hear it above everything, but I sleep well so I'm lucky. My poor family suffer as well. My youngest daughter gets married soon and I'm just not there for her as much as I should be. It's breaking my heart. I'm missing out. I force myself to do things otherwise I'd stay in bed all day. It's so hard for people to understand, hubby says just chill and watch TV, but I hear it louder then. I get new hearing aids on Thursday with built in maskers, I really hope they give me some relief. I'm going through breast cancer as well. Had my lume out, radiotherapy and now waiting gir reconstruction. Life's a bitch isn't it? xx

[Mrsgoggins in reply to Ingrid-p]

So sorry to hear about your breast cancer. One of my happiest moment was when I woke up after my reconstruction and saw the result, was so happy. Having tinnitus now is dragging me down. I feel I’ve been through all the horrible times and it’s not fair. I Was having an extremely bad night last night. My husband was great. Holding my hand while I sobbed. He’s been so supportive through the cancer and now this. He says he feels helpless and can see the state I’m in. i see you say you just want to stay in bed, Im the other way. I hate bed time snd the second I wake up, Ive to get up as the noise in my head is screeching. Because of this Im exhausted. If anything I’ve got into lots of different music artists as I search for soul, acoustic and slow jazz to try to listen to in the back ground. I use to get to sleep alright but a few weeks ago the tinnitus got a lot louder and hasn’t quietened down and like you it’s louder than the tv. I do have a hearing aid !!!! It helps if I’m watching something Im really interested in. Hope the hearing aids work better for you. Then you can look forward to your daughters wedding. Or you could join me in prayer ( Im not religious one bit 😳) But last night I ended up praying to please take the noise away!! The last time I prayed was the morning before I went for my results after getting cancer for the second time. The doctors had talked about it being secondary cancer but I was very lucky and it was another primary. so my prayer worked and Im still here 😁 So maybe if I keep praying, my tinnitus will go away!!! Was thinking, possibly the stress of your breast cancer won’t have helped the tinnitus. Life’s a Bitch and then some! Xx

[Ingrid-p in reply to Mrsgoggins]

I’m going to message you privately xx

[KC1961]

The hearing therapist is probably a good idea. I found it very helpful, it was good to talk to someone who looked as if they understood and seemed to be on my side, rather than looking at me blankly. I always left my meetings with her feeling much more positive and convinced that I would beat this thing.

Best wishes

Kenny

[Barbara-C]

Sorry your feeling so down . I was exactly the same when mine started seven months ago..crying all the time didn't know how I could live with it. Doctors make you feel worse because they don't know what to do just stare blankly at there pc screen and hand out antidepressants. But things do get better try not to get stressed..hard I know. Please take care x

[LouisepMartin]

You are not alone believe me. My life has completely changed. Not only that but I also have other crippling physical problems which have come as a result of tinnitus and ensuing anxiety. My bladder is shot to hell as it decided to go into overdrive for 3 months and now I have chronic pain there. I don't sleep even with meds as I have to wake up at leaat 4 times a night to go to the loo. Body is in constant flight fight mode. But we must try and find a way back to who we were. FOR EACH OTHER AND FOR THOSE WE LOVE. I know we can make it if we stick together somehow. I struggle every day and hate taking meds but I am sure there is a way through. I live in Sweden and I had no referral at all just meds. I might get a referral to a hearing therapist in May which is 7 months after my tinnitus started. 😢 Still no info yet.

I am sending you lots of virtual hugs and as much positivity and compassion as I can muster. I am thinking of you as I also think about all of us on this unpredictable adventure.

Btw Have you down loaded the Calm app recommended to me by the kind people at the British Tinnitus Association? I use it every day for a short meditate and the stories and background sound to help me at bed time.

I will be joining as a member of the BTA soon and hope to go to the event in Sep that is being held regarding tinnitus. Maybe you wanna come too and we can get a group together.

KNOW YOU ARE NOT ALONE.

Louise

[Lynne-H]

What you describe is exactly the way I felt three and a half years ago. It was six months before I started to see a little light at the end of a very long tunnel. Now despite tinnitus I have my life back.

Don`t give up - trust me things will get better.

Lynne

[LouisepMartin in reply to Lynne-H]

LynneI am re reading my old messages and your reply in 2021 and I have got my life back so thank you for the encouragement. Things have got much better for me. Hope you are well. Stay safe from Sweden.

😃

[Lynne-H in reply to LouisepMartin]

Hi Louise

So pleased to hear that thing are better for you and that you have your life back.

Yes I`m ok thank you - had a bit of a setback in November after having my ears syringed which I`ve had done many times before with no ill effects. Anyway a week after the syringing I gained musical tinnitus and a couple of other noises.

With the knowledge I gained from my first experience of tinnitus in 2014 I`ve managed to stay positive (most of the time !!) so just getting on with my life as best I can.

Lovely to hear from you. You too stay safe and well.

Lynne xx

[Curlew]

Most of us with bad intrusive T have been where you are now. I didn't, couldn't believe that I would ever feel and different in the early stages, but believe me , you will.I live my life as normal now, sometimes the T seems to calm down for a day or two, sometimes it's incessant, but the difference is it no longer bothers me anywhere near as much.

Your brain WILL adapt, but you have got to have a positive mindset and take it one step at a time.

You won't believe what I am telling you, but others too will tell you it us right.

In the beginning I decided I would 'fake it till I make it' . That seemed to start to work and I gradually gained my life back.

It will happen to you, don't panic, don't let sten to others who are depressed and not coping as well and take all the good advice you can get.

You will be ok😊

[wish2heal in reply to Curlew]

Tnx xx

[wish2heal]

Tnx everyone for kind support. At work after another sleepless nite. I use to find life so exciting, now wake up with the burden of whole day ahead, some days a vegetable state, drag myself to do things. I have so many questions x

[wish2heal]

Do I need a scan, Gp said Ent should request one, Ent said Tinnitus clinic will request it if required. When I attended the Tinnitus clinic, they said I should ask the doctor. It is frustrating.

[wish2heal]

I had a ear blockage last year sept and was referred to hospital for micro suction as I have very narrow ear canal, by the time I had an appt my ear was fine, still nice Ent doc removed the wax gently in 2 sittings. My ear was fine, went holiday. Jan had blockage with flu and went back to hospital. This time young female doctor removed more wax. I said my ear is fine now but she carried on, she used some drops in my ear and was pulling my ear very roughly and never said a word, then she had another go at micro suction with very high pressure which I had never experienced before, there was sudden blow to my ear. Doctor didn't make eye contact with me and sort of rudely said come back next week. I knew she had done some damage to my ear. Now nobody taking any responsibility.

[Suji778 in reply to wish2heal]

Do you have sinus ? You said ear blockage a year back don't panic ,1st have scan test to rule out nerve cell damage or ear damage .

If your scan is normal ,Your lucky person T will automatically calm down or you can find cure.