I'm Hayley, Tinnitus for 21 Years and Counting

Hi everyone,

I'm Hayley, I've had tinnitus for 21 years now. What started off as pulsatle tinnitus has turned in to a 24/7 roaring. I didn't take good care of my ears.
When I was younger, I thought perhaps this would just solve itself and I was busy doing what my other friends did - being in loud places, listening to music loudly (really irresponsibly I might add). Needless to say, I feel incredibly guilty. Even though I've always had ear problems (ETD, ear drum scarring) I really could have helped myself not let it get this bad.

Like most of you, if not all of you, I'm hoping for a cure, or a little bit of relief. Even just a little!
I'm really glad I've found this community and it's great to see the conversations that are going on.

Hopefully speak with some of you soon. Take care xx

 

Welcome!

 

Hello, @Hayls32, it is very nice to meet you. Welcome!

I found this community a little over a year ago and I am so happy that I did. You will find plenty of support, encouragement and empathy, here.

 

Thank you Emmalee x

 

I as well really regret all the noise exposure I´ve put on myself over the years. Especially in my car and headphones while jogging. Never ever thought something bad as tinnitus and noxacusis could be the harsh reality.
WE NEED A CURE!!

 

You are most welcome.

You have dealt with tinnitus for a very long time, @Hayls32. I am thinking that you have much to offer this community.

 

Greetings @Hayls32 great to have someone here with as much experience as you. Wondering how you are coping recently?

 

Hi

Well at the moment, not so good, I'm a sufferer of migraine and I've been having a rough time of it lately, particularly because I get dizzy all of the time. It does feel like the tinnitus volume has heightened somewhat thanks to the anxiety and other health issues.

However, over the years I only really noticed the tinnitus when I have been in quiet places. Most nights I sleep with a white noise machine to drown it out. It's only in the last 6 years or so that I've been looking at treatment and potential cures. No one wants to live with this forever.

I've coped OK over the years. I've had it for so long that I think I've accepted it as part of who I am. Having that mentality helps me fight off the fear of it being there. But now that I'm getting the migraines and dizziness, I have been really looking in to getting some support and looking at the work people are doing to fight this. I never held out any hope before, but I do now. Even if its over the next ten years, and even if it's only to turn the tinnitus down I think I'd be happy with that.

How are you coping?

Hayley x

 

Yes, we do. Hang in there x

 

Thank you

 

Welcome Hayley! I have had tinnitus for a year and a half now. I think it is slowly improving and wish that one day silence will return. I wish you can find relief soon with your migraines and dizziness.

I guess the best advice anyone in here would give is that we need to protect our ears from now on. Stay away from loud concerts and do not use headphones if possible when listening to music.

 

Hey! Thank you

Oh yes absolutely. Give your lugs a break from the noise is the best advice. If people do listen to music through headphones, then do so at safe levels and have a break from them also.
Buy ear plugs for concerts etc. Xx

 

Welcome to the 20+ year T veteran club.

I think anyone who has successfully coped this long has a lot of grit. Only someone else who has battled T this long can understand.

 

Hi Glenn



I guess we don't really have a choice. We need to keep going or what else do we do

Having had this for so long, we have been through the era of 'put up with it' to now seeing that there are people out there who genuinely want to help and find a cure. Never thought I'd see the day.
So long as we are alive and kicking, there will always be hope. It doesn't mean the battle is any easier, I've had my share of rough days and despair with it.

Hope you are ok! And thanks for the welcome xx

 

I believe this with all of my heart. We must never lose the hope, wether it be for a cure or the strength to continue to live our best life, in spite of tinnitus.

 

Can the NHS provide someone to give you head massage? Is there a friend or family member who can help by rubbing your head and neck sometimes? I know it's a big ask, and I know it would cost a fortune in London, but that would really help. Hot baths, and anything cozy. I truly feel for you my dear, you deserve a break, some peace, and comfort. I really hope your tinnitus backs off and your migraines ease up. Sending you strength and love. Your story really moves me and humbles me. Catch you around.

Daniel

 

Thank you Daniel yes I could definitely do with a head massage, especially as I deal with migraine too! Thank you for your message x

 

@Hayls32 Keeping on top of the research and getting involved in the debates helps me, I am habituated - that to me means I accept the noise level it is now but it also means I would pay for an effective treatment to diminish or reduce it because I still do not like it. Until then, I just put up with it.

I think the next thing we can look forward to is Lenire and bimodal stimulation. If that turns out to be a flop, there’s also hope from companies such as Otonomy, Frequency, Decibel. There’s also Dr. Tzounopoulos's work who is looking at various brain channels.

I don’t think we will have tinnitus for life, tinnitus is too common with a high prevalence and it’s a matter of time before it’s figured out. The reward will be great to the company that can even reduce it by half for a majority.

Tricky little bastard it is though X

 

Can you try magnesium for your migraines?

 

Hey, yeah I'm taking it daily as well as changing up my diet etc..xx

 

Hey Paul,
Oh yes it is a bastard even in the best of times. I'm certainly paying more attention these days to the research, it's now becoming such a big problem that the researchers and scientists out there can no longer ignore it. That said, I try not to get my hopes up too much, but I still pray (to anyone) that something good is coming.
Keep in touch
X

 

That said, at times I do have hope because I believe that whilst we are alive there is hope. Just sometimes I try not to pin everything on it. Hanging in there like the rest of us x

 

Hey Erik,
Thanks for the welcome thanks for the tips also. I'm taking magnesium and riboflavin but its been a persistent problem. Now I'm taking ammitryptaline too to help. Unfortunately, my eye had a stroke in December so dealing with visions problems too, which have no doubt upped the anti with my migraines. Just a bloody mess over here Haha!!

Fingers crossed for this recent research to come through and help with something x

 

Can anyone recommend one hearing aid device over another? Or at least what not to buy? I am looking at a pair of 5,000.00 units that promise a potential reduction in the T but no help with the actual hearing loss

 

Hearing aids are meant to correct hearing loss. The benefits to Tinnitus is simply linked with the improvement in hearing they provide.

You need to try them on to decide if you like them or not. There's a variation in sound quality/style.

 

Isn't it sad that 21 years later and still there is no cure. I don't think anyone is trying to cure this illness. It's pathetic.

 

There is a lot of work being done. Hang in there, I know it's tough x