Has tinnitus changed you? If so, in what way?

[ade-the-pade]

Folks,

I was reflecting on my four years of T and trying to remember what I used to be like. Clearly we all change as we get older but I have been thinking about the part that T played. Here is my plan if you want to join in. I will list a positive for every negative that I mention. Some are contradictory but that is the nature of T.

1. I have become more short tempered!!!

2. My resilience is less as T causes me to dip into my reserves.

3. My overall mood is generally lower.

4. I get angry about the unfairness in the world.

5. I sometimes feel resentful that people I feel are underserving, do not have T and I have.

6. I miss certain social events as it kicks off my T

7. I hate being needy but sometimes I just am.

Now the positives-

1. I am more compassionate towards people who are struggling with life.

2. I feel more connected with people around me. When I am connected I worry less and my T is less noticeable. This can be one-to-one or even on the Forum

3. I am more thankful for having friends and family.

4. I have to keep busy so I spend more time at the gym. Much fitter.

5. I work harder at making positive memories.

6. I am not such a pushy parent and realise that "happiness" is much more important.

7. Little things that used to wind me up have now become unimportant.

8. I now truly understand the term "Your health is your wealth". I give more to mental health charities.

I have listed more positives but I still hate having T. Please feel free to add your positives and negatives. I found it quite cathartic. Hopefully you will too.

Wishing you peace and quiet.

Ade

[IvanMilliau]

Very recognizable/

[WoodyT]

Yes - those are all relatable . Your positives are my goals .

Right now, I’m in the depths of despair. My T has increased dramatically, with more new tones . The screaming in my ears , along with fire alarm sounds is deafening. I developed a new tone at the weekend of a deep loud fog horn . I’ve become so sleep deprived, can’t think straight and anxiety is at an all time high . My family are losing patience . Dark thoughts are with me every day . So right now my negatives are all consumed by this amount of stress .

I’m just hoping to focus on the positives one day .

I need to make a list Ade, just like yours to keep me going .

Take care

All the best

Zoe x

[ade-the-pade in reply to WoodyT]

Hello Zoe. Sorry to hear that you are in such a bad place. I have been there and I hate the fact that life is like a battle field. I share your pain as it is awful when you get a new sound or the intensity increase. Take care of yourself and get plenty of TLC.

I was on strong sleeping pills for a while. ,Zopiclone. They git me through a difficult time.

Send you a cyber hug.

Ade

x

[WoodyT in reply to ade-the-pade]

Thanks Ade - it’s the hardest thing I’ve ever had to deal with . Surely this isn’t humane to allow this amount of suffering without any help ? ...... Did your spike after the Lenire treatment, calm down ? I often think of you .. did you ever try the treatment again .

I can’t understand how ENT’s or specialist can tell you to learn to live with it , when there’s so much pain with the screaming, along with vertigo and balance problems. It has increased so much in the last 3 months , my brain feels like it’s shaking from the noise . I can’t hear the Tv or radio over the screams - so life has become pretty unbearable .

If you go to the GP , they know very little about the condition. They write prescriptions and send you away . Tried Sertraline last week which has had an awful effect on my tinnitus.

I’ve stopped that a week ago - but the new intensity has remained, which is devastating .

My partner and family are losing patience, they have had enough and think it’s in my head . You couldn’t make up this amount of noise and distress !

Thank you once again .

Here’s to quieter days

All the best

Zoë x

[ade-the-pade in reply to WoodyT]

Poor you. My heart goes out to you because I know what it is like.

I'll send you a PM.

Ade

[Ingrid-p in reply to WoodyT]

Hi Zoe

I'm trying to stay away from the forum, but I popped in to read Ade's post as he mentioned it in a private message.

I literally feel like crying after reading your post. It's unbearable knowing that there's nothing we can do about this awful condition.

In the early days (38 years ago) I felt just like you and I have felt like it a few times since then. At the moment I'm going through a bad phase, but I'm hoping it will ease off. Normally my brain kicks in and decides it's not worth bothering about. Hard to believe, but that's what happens for me. It takes a few months, but believe me it can and does happen. My t will be the same, but it won't bother me.

It makes me so angry that more isn't being done to help us. The BTA offer support, but we need a CURE. It's a debilitating, life changing condition. Making the public more aware of this is essential. Nobody really knows about it till they get it or someone in their family or one of their friends get it. I would love to see a documentary on TV about it and interviews with REAL sufferers, the ones who have contemplated the worse. I can't bring myself to say the word, but I'm guessing you'll know what I mean.

We need positive help and now.

You're in my thoughts, please message whenever and I'll be there for you.

Take care

Ingrid xx

[WoodyT in reply to Ingrid-p]

Thank you Ingrid , yes I agree , it’s frustrating that nothing can be done for us .

Prescription medication just makes it a whole lot worse . They then label us as a mental health case and want us to see a mental health team ! This is not mental, this is distressing and debilitating . I get so cross as they say , we are depressed and we need to ignore the sounds ..... how ?

We are sleep deprived, we can’t function properly , what the hell do we do ?

I can’t believe you have endured 38 years of this . You are certainly a T warrior that has battled on . I admire you so much . Keep going Ingrid . I’m only 14 months into this . I wished that I had dealt with this differently, and not chased a cure or medication to stop it. My mistake, I’m now having a few glasses of wine a day to get me through. It’s bad but it’s the only thing that keeps me sane xxxx

[Ingrid-p in reply to WoodyT]

Hi Zoe

It's such a cruel thing to be robbed of silence that no one can possibly understand.

I try and steer clear of medication, but there are things that I have to take. Last time I saw my GP I was in the middle of a panic attack and she wanted to put me on beta blockers. For the first time ever she looked up the side effects and said that because of my t she wouldn't give it to me as it would probably make it worse. I wont take anything that lists t as a side effect. I'm supposed to take statins for high cholesterol, but again one of the side effects is t. I can't afford for it to get any worse than it already is. Obviously this is my decision though. I do see a homeopath every couple of months which I feel is beneficial, but that could be the placebo effect. Don't really care if she gets me through my bad patches.

I agree with you, how can we ignore the sound? But in time the brain can tune it out I've got first hand experience of this. Habituation is possible, but it can take time. It happens gradually, second by second, minute by minute. Very hard to explain, but I'm sure you'll be ok. You will have more good days than bad I'm sure.

Enjoy your wine, I'm having a couple tonight as it definitely takes the edge off and I've never found hangovers make it worse 😊

I'm not a warrior, yes I've had it a long time, but it hasn't always been bad. It goes through phases.

I truly believe the cure is out there, but awareness of this condition needs to be put out there. I cringe when I see so many people constantly plugged into their phones listening to music far too loud. Once the damage is done it's too late.

Enjoy your wine, tomorrow's another day and it might not be so intense for you.

Take care

Ingrid xx

[Vibe19]

Just over a year into the constant loud tinnitus:

Input is minimal in my area and had to push for an individual audiology appointment - finally have a review next week - I am hoping I can persuade her to prescribe hearing aids with backers.

Positives

I have more resilience than I had before.

If I am immersed outside then I do forget.

Negatives

Lack of sleep.

Grumpy.

[ade-the-pade in reply to Vibe19]

Hello Vibe.

I have the hearing aids with the maskers. The hearing aid bit is off and they play brown noise and white noise. They are a life saver. I use them every day. in work, watching telly or out in a restaurant. The audioligist said they don't issue them for T but a really kind Dr insisted that they be issued.

Kind regards.

Ade

[Vibe19 in reply to ade-the-pade]

Mine were prescribed for congenital loss 2 years ago - make no difference to tinnitus - she said she might add backers this consult

[ade-the-pade]

Hope it goes well and that it makes things better for you.

Regards

Ade

[Vibe19]

Thanks - she wants the hyperacusis to become more manageable before trying aids again....so feel no further forward.

[ade-the-pade]

I have hyperacusis in my left hear. When they tried the amplification it was unbearable. Hope all works out

Ade