Feeling scared: My tinnitus is getting out of... - Tinnitus UK

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Feeling scared

Dean1405 profile image
16 Replies

My tinnitus is getting out of control. I have some much sound in head and both ears and and horrible static hiss . I don’t know to cope anymore . I am wearing my new hearing aids with white noise and under the care of NHS. I couldn’t sleep last night as the noise was so loud . I am off to see the Doctor tody as I am getting more and more stressed and desprssed and I can’t see that I can live with this any longer . I take amitrplyne to help me sleep but not last night. I know I am getting more stressed and focusing more but I have developed a new sound this week and in total despair . I cannot see myself ever returning to work and this is making me more stressed due to money worries .

I’m trying relaxation techniques but nothing is working and I can’t believe this is normal.

Feeling so isolated from the world right now

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Dean1405 profile image
Dean1405
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16 Replies
Ruud1boy profile image
Ruud1boy

Everyone on this forum is walking with you Dean.

Getting stressed only makes it worse unfortunately. The most reliable thing to make it 'better' is the passage of time. I saw a website a month or two ago that pulls together all the current thinking on T and they had tried to encapsulate the issue in one sentence - "it's unlikely you will get rid of your tinnitus, but it's probable that the level of distress you experience will reduce significantly over time". Not much to cling on to I appreciate.

You've not mentioned how long you've been struggling with T? The initial period is usually the worst, but unfortunately those 'early days' can be c.12-18mths or longer. A maxim I've come up with is that you're never going to get rid of it, until you accept that you're not going to get rid of it. Once you accept that it's here to stay, you can start learning how to live with it.

Dean1405 profile image
Dean1405 in reply to Ruud1boy

Hi , thanks for responding . I have had tinnitus in my left ear for 13 years and habituated twice to it and lived a happy life . Around 4 months ago I developed head noises and right ear hiss which I have our down to using a hedge cutter without ear defenders . A week later after gardening my left ear b come loud and right ear hiss which has become loud along with head noises .

I’m so depressed and with so much noise I can’t function .

suew395 profile image
suew395

I really do sympathise with you, I have noticed the sounds in my ears getting louder and it really is worrying, I know it not easy not to get stressed about it but it really doesn't help.

Maybe you could talk to work about it, they should be understanding and talking to them might help.

HI Dean,

I am sorry to hear that you are going through such a difficult time at the moment. You might want to try turning off the white noise for now and just use your hearing aids. This will often make the tinnitus sound reduce over time because the auditory system and brain, no longer have to work so hard to hear sounds from the outside environment. At a later date you can try introducing the white noise again.

Take care and hope you start to feel better soon.

Michael

You are taking amitrplyne so your doctor must think that you are coping badly with this. That's a slippery slope I think and suggest you get as much help and therapy as you can get without the need for anti-depressants.

Make sure you are keeping your environment busy and full of distractions as sitting in silence listening to your ears is no fun.

I only use white noise at night to sleep and once in a while in the evening if it's bad. I only put the noise into one ear. I pretend that the white noise is pushing the tinnitus out the other ear and that helps.

If this is keeping you off work you need to ask yourself why? Tinnitus does not stop you doing anything, it's just a hugely annoying and at times distressing condition. Surely being at work will keep you occupied and bring normality to your life. Sitting around all day just seems like the wrong approach.

Please do try to look at the positives. It's likely to improve with time so long as you look after your ears and it does not stop you doing anything.

Ruud1boy profile image
Ruud1boy in reply to

With respect Sundial, you don't know what his doctor is thinking. It seems to me that his doctor is better placed to offer advice in this regard than you are. I take Amitriptyline as a result of the T and most tinnitus counsellors advise that if meds are required to help relax / destress / keep a lid on emotions, then it can be beneficial in terms of allowing habituation to develop.

in reply to Ruud1boy

Well said Ruud 1 boy

I am a believer in taking medication to help with tinnitus. This condition can be very debilitating when it is severe and each person copes with it differently. Some people are adverse to taking antidepressants and rather cope the tinnitus alone. This is not usually a good idea as one can find themselves spiralling downwards FAST!

Michael

in reply to Ruud1boy

Noted. I am not a doctor of medicine. I'm one of those people who steers away from any long term medication if possible. Most serious drugs have side effects and I think that Tinnitus being a permanent condition for most of us should not be a way in to taking meds long term. There have been studies showing that amitriptyline is effective in reducing the perceived severity of Tinnitus but I would not take it.

Ruud1boy profile image
Ruud1boy in reply to

Fair comment - the Amitrip doesn't do anything to reduce the volume or intensity of my T, but I started taking it when I was really struggling to cope with the T. I was concerned that I wasn't able to maintain control of my negative emotions and I felt without some sort of help I was in real danger of doing something daft. It's hard to say whether it still has any positive impact on me, as it's difficult to compare my current state of mind with where I was 6mths ago. It doesn't appear to be doing me any harm, so I'm still taking it daily, albeit at a very low dose. I do keep thinking I should have a trial period of not taking it, but the fear of returning to where I was mentally 6mths ago is frankly overpowering.

Interestingly, there are lots of different meds that different people take to try and counteract the effects of T - nortriptyline, clonazepam, loads of others than I don't recall now. When I saw my GP, he effectively said he'd be happy for me to try whatever I fancied from these various drugs. There aren't any clinical guidelines for meds to treat tinnitus, so it's a bit of a free for all as far as I can see.

Jimmuck profile image
Jimmuck

Hi Dean. So sorry hear about your predicament and you have my full sympathy as I have exactly the same head noises on both sides. I am still in the early stages of trying to cope with tinnitus and over the past few months, I have tried a whole load of different techniques, mainly garnered from the internet but none of them have been very successful. However, one thing seems to calm it all down for a wee while at least and that is playing music. I don't mean just listening to it but actually playing it on an instrument. I play a bit of banjo and mandolin, occasionally the accordion or keyboard and it seems to distract my attention from the awful commotion going on inside my head. Incidentally, I am also on 10mg amytriptyline which I take just before bed and so far, I am sleeping without too much difficulty, so keep taking the tablets as they say! I hope you manage to get some relief soon and please keep us posted on your progress. Best wishes and good luck.

Dean1405 profile image
Dean1405 in reply to Jimmuck

Many thanks for your response, it keeps me sane. I have take amitrip for years for my left ear and helped me habituate. I’m now taking fluoxetine as I have reached a real low point. Interesting though my right hiss and vanished on tues and Wednesday and my head was calm . Today my left ear tone which has been the same for 13 years has changed to a whooshing sound with an alarm sound in the background and wih intermittent sound of fly. The right ear is hissing again . I extended my ear white noise generators today from 2 to 3 hours and now the new noises . I’m very freaked out

Curlew profile image
Curlew

I don't know if this will help but I was just starting to feel I was coping better with my T when my lovely mum passed away. At this time it seemed to get so much louder and I kept getting all kinds of extra noises, whistles etc on top of it all. I was very scared as I thought it was permanent. I have to say though, it lasted about 6/7 weeks then seemed to calm down a bit and I think I am now back to where I was before the increase.

This increase in your T might have a cause, but like mine hopefully it will settle the thing is it might take time. As I am learning patience is the name of this game 👍 Hope you are soon feeling better.

Jam-1 profile image
Jam-1

I know how scary it all is and totally overwhelming - please hold on all things change and things never stay the same . You will find a path through . Sending positive vibes through the Internet

Anne-Elise profile image
Anne-Elise

I had mild tinnitus for several years. I was diagnosed with Fibromyalgia about 3 years ago and prescribed 10 drops of Amitriptyline at bedtime to help me sleep. It did help me sleep, but after a few weeks I started having dreadful nightmares and my tinnitus became much worse. After several months I decided to slowly stop the Amitriptyline. I managed to stop, and the nightmares stopped too, but for the last 2 years my tinnitus has remained unbearable. I would caution anyone against taking this poison.

starshine53 profile image
starshine53 in reply to Anne-Elise

Well said Annie, I too suffer from Fibromalgia and when I have a spike nightmarish dreams are all to common, and that's without Amatriptyline in my blood. So I don't associate my nightmares with Amatriptyline because I had nightmares before I was on the sedative. Although, to be fair, apart from Tinnitus and Hyperacusis I have " exploding head syndrome" EHS , which 18 percent of the UK population suffer from to a greater or lesser extent. So I have nightmares with or without Amatriptyline . When I wake up in the morning a nightmare lets me know I've actually had a sleep. You get used to them after a while.But I agree nightmarish dreams are grotesque in nature.

Best Wishes for 2018

starshine53 profile image
starshine53

Hi ! I do feel for you, I know the first 2 or 3 months are the worst with Tinnitus particularly if the noise changes pitch. Importantly, in your situation is your own concentration because whatever you concentrate on grows on you this includes Tinnitus. I find hooking up a sound generator to two large speakers on white noise setting diverts my concentration away and the sound appears lower in tone. The trick is not to have the sound up too high otherwise you block out the Tinnitus signal to the Brain. Lastly, you wont have the same Tinnitus uour experiencing right now for the rest of your life but a much lower in intensity and tone.

I know how you feel because I and other members here know the fear and soul destroying torment of early stage Tinnitus. Moteover, in a short time you will start to pick up the fragmemts of your old life .

Best Wishes for a speedy recovery

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