Recently diagnosed, struggling a little, but ok. :)

[nudawnfades]

Hi all

I wanted/needed to find a safe space where there are people going through the same thing. It's all very new to me and as I say above, I am struggling a little.

I went to the doctors back in March due to a very high pitched and constant buzzing in my head. I was thereafter diagnosed with high frequency hearing loss and subsequently tinnitus, no doubt caused in part by 25 years of military service.

The last couple of months have just been getting used to the situation and finding ways of minimising the effects. Sound therapy works at night. I have a white noise mp3 that acts like a switch. It just turns it off. When I'm outside most natural noises seem to keep it at bay. The stereo is now always on in the car. It's always there though and as I'm sure you all know the quiet times are the worst. Having to deal with it probably being the forever is a struggle, and the thing that’s getting me down. That and having to give up coffee for decaf too :).

I've read a little about 'habituation' and was wondering if anyone here has experienced this? Or if anyone has the same issue as me with the constant high pitched tones and has any tips.

This reads like a rant more than anything else and I'm sorry about that. I'm just glad that there is somewhere I can go to do it, as there is really no one else that understands what’s going on in my head right now.

Thanks for reading

Steve

[Angela-H]

Hi Steve and welcome to this friendly forum. I acquired T 2+ years ago and initially I thought that my life was ruined for ever. Thankfully I had a good NHS audiologist - GP and ENT useless - who talked me through the pain for weeks and weeks. I too have high frequency hearing loss but in one ear only. I was given a hearing aid for that ear and a masker for the left. I also found this forum and the BTA whose support was invaluable. I bought a sound oasis machine which I have on every night, all night, at a sound level where I can just about hear the T. I have low level noise around me all the time to push the T into the background. After a few months (of loud and painful T) I realised there were times I didn't hear it. Those quiet periods gradually became longer and the T got quieter. This was my habituation. Even if I hear it it doesn't really bother me. My life is back to normal - but of course great care has to be taken not to irritate the tinnitus. Angela xx

[nudawnfades in reply to Angela-H]

Hi Angela and thanks for replying. It's interesting you mention hearing aids. I was told by my GP that and aid wouldn't make a difference to my tinnitus or my hearing, Even though I have high frequency hearing loss in both ears the rest of my hearing levels are perfect.

I literally have one sound file that works for me. It's high pitched white noise with a bunch of blips and beeps thrown in (sounds a bit like R2D2). I'm sure there are more that would work, I'm just at the beginning of finding out what works though. Any low frequency stuff doesn't touch it. I have considered a sound machine, I take it yours works quite well for you?

There are times when I don't hear it, normally outside, when in conversation with others and in the car with the radio on. However, I always hear it when watching the TV, even if it's loud. I think if I let it, I would hear it all the time. It's here with me know as I write this reply to you. Sometimes it's loud, but never really painful.

It's all new to me really and I'm just trying to understand it all. I can only hope it gets better, as at it's worse it's really quite debilitating.

[Angela-H in reply to nudawnfades]

To br frank Steve, GPS know very little about T. I was told my then GP and ENT that I would just have to live with it - very rude and cruel in my opinion. Hearing aids DO make a difference. I know this for a fact as when I take mine out my T gradually becomes louder! Hence, if I don't get to sleep within 30 mins, my T can keep me awake. My sound oasis is great. Must go now as my bloke is taking me out. Catch up soon! Xx

[JohnJopp]

Hi Steve and welcome to the forum. If you're "struggling a little" then believe me you're doing pretty good. Most of us struggled a hell of a lot when we first got T. You seem to be doing everything right. Sound therapy at night seems to be working for you. Sleepless nights is usually the first problem to overcome which can be very draining but you sound like you're sleeping ok. I also find that being outdoors is the best distraction for me. Try to keep busy and active and avoid quiet rooms. Habituation is a long slow process. It doesn't mean that you won't hear your T, just that you will become less and less aware of it as you will find it easier to ignore it over time. The issue with hearing aids is interesting. I too have high frequency loss on my T side but my audiologist flatly refused to issue me with a hearing aid. She claimed that they should only be issued if you have trouble hearing under normal circumstances - speech and so on. If you have a hearing aid for high frequency loss then she claims it can do more harm than good and could actually make your hearing worse for other frequencies. Having said that, I do know others have had a hearing aid for high frequency loss and they do say it helps with their T. I guess it's something you have to discuss with your own ENT/Audiologist .

John

[LuverlyLucie]

Hi Steve. Welcome. I got mine in March. I've had a hearing test and have yet to see an audiologist.

I really struggled at first and had a few major meltdowns but this amazing group got me through it.

When I'm busy I don't notice it too much. If it's a loud day and I'm say trying to write an article at work it can be really intrusive and draining. I usually get about 1-2 low level tinnitus days a week.

Some of my friends have it and the volume and sounds vary.

My late teens and early 20s were hell and I had over 20 years of therapy so I guess that's made me stronger.

Tinnitus is part of me but it doesn't define me. Accepting it and not being afraid of it has really helped. Above all I won't let tinnitus stop me enjoying my life.

I hope this helps.

Love Luverly Lucie x

[Hidden]

Hi Steve, Like you i am struggling hell of a lot with my T. My T only started july 2016 constant high pitched buzz in my head had all the normal tests done MRI and CT scan nothing nasty going on, I was told by Ent go home and get on with life easy said then done i dont get a break from it, Had appointment with audiology 19th April was told severe hearing loss on side of T i get my hearing aids 1st June i cant wait every 1 has told me my T will be quieter, Nothing works for me i just plod on day to day life sucks at the moment the audiologist said i need to see ent asap re hearing loss just got letter cant put you on waiting list it is to long ring in 8 weeks to see if list has gone down lol. They say my T is with me having TMJD waiting to have jaw washed out but my cut off date is 12th May not even on that list yet lol. This group is brilliant helped me cope so 1 to rant and rave at and they all know what we are going through as like us they have T as well... Have a great Sunday Steve x

[Dave-G]

Hi Steve

You will on your journey with T read many good words of wisdom from many a good folk on this forum as you have read so far already, but there is one word I think that takes a bit of getting used to and that word is acceptance.

Many people write that when you start to accept T then you can start to move forward one step at a time, and that's very true, once acceptance is achieved then the coping starts to kick in, you begin to understand what triggers T and what seems to quieten it, coping will come second nature to you as the days turn into weeks and the weeks turn into months and so it goes on.

I've had my T friend now for 17 years and its fair to say that in the beginning, it was difficult I would be lying if I said otherwise, but I cope and it does not play a part in my everyday life anymore, yes it would be nice to have a bit of peace and quiet now and again but that I'm afraid will never happen but I'm not bothered by that thought in the slightest anymore.

Keep up with the sound enrichment especially at night when all around you is quiet and of course, distraction is another tool with which to hammer the T with. Lastly, try to keep a lid on the emotional side of things easier said than done I know when we live in this 100mph non-stop lifestyle we sometimes find ourselves in but, if the situation is getting too much then I find taking a step back from the coal face so to speak for want of a better term, and re-assessing the immediate situation/ problems helps to calm the mind which is always a good thing to do where T is concerned, also it does help to keep the stress to a minimum

Keep us all posted

Dave.

[Hamish4]

Hi Steve, sorry you are going through this. I have had tinnitus for 5 years after chemotherapy. It is a day to day thing of coping. If I am down it is worse. I have looked at acupuncture, but I don't know. Keep in ,touch, someone might come up with a miracle. X

[nudawnfades]

Thanks to you all for these great and constructive comments. I've many things to take from in reading all this. The past few days have been pretty bad if I'm honest. My worst crime at the moment is to surround myself in silence waiting for it to hopefully go away. This of course isn't going to happen. At the moment I don't think there is anything in particular that triggers it. It's just there. The sound enrichment at night does work, although to me it's just replacing one high pitched tone for another thats a little easier to listen to. I'm sure I'll pick things up and learn whats right in time. As Dave-G has said above, I've come to realise that acceptance is probably the key. I wish you all well and thanks again :)x

[Angela-H in reply to nudawnfades]

Hi Steve, you seem to be a calm person, and that is a positive in taming T. I have to avoid situations which may cause stress as that definitely makes my T louder. I have made lifestyle changes but my life is still good, though not as busy as it used to be.

Re hearing aids, I usually wake up with noticeable tinnitus but shortly after putting in my aid and masker it begins to quieten, and by mid morning my T is so quiet I forget I have it. During a usual day, it starts to reappear late evening. It is all very odd isn't it? I have low level sound around me all the time e.g. radio in the house or car, and the sounds of nature when out walking. I have my sound oasis on rainfall all night, every night.

You are on the right forum for positive advice and of course the BTA website is excellent!

You're not alone Steve, we're in it together. Love, Angela xx