I've just started with tinnitus it is at present loud, high pitched and constant. I have seen my GP who wants me to wait 6 weeks before he refers me to ENT as he thinks it's stress related. I have a private appointment with an audiology consultant. I dread going to bed at night as I cannot sleep for the noise in my head even with background sounds it is making me desperate and anxious. I also have a burning sensation. I've always gone to a lot of gigs and fear this may be where the problem started. I'm confused with background noise to cover the tinnitus indoors and then when going out wearing protection so that I don't get this background cover? Any tips or hints to help me at present would be welcome.
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Thinkzs
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It's never good news to hear of someone new with tinnitus. I think you have done the right thing to book a private consultation, as even if your GP refers you to an NHS consultant, you may be waiting a long time for an appointment. Just the opportunity to talk it over with someone can provide some mental relief. Even though you're initially going private, if you do eventually get an NHS appointment, take it, as it is good to get into the system - they may refer you to NHS facilities in your area, such as a Tinnitus Clinic.
In the meantime, your brain should get used to the new noise and learn to push it to the background, where you won't notice it as much. Regarding background noise, this is often referred to as masking, but you are not supposed to drown out the T with it. In my view, it is meant more as a distraction, a soothing external sound to take your brain's attention away from the T. In bed, I sometimes play 'waves on a shore' and try to concentrate on that rather than the T. When you go outside, I wouldn't say you're supposed to wear ear protection with conventional T - this is more for someone with hyperacusis, and I'm not sure it is always a good idea then.
Where are you getting the burning sensation? In your ears or in your head? I'm assuming your GP visually inspected your ears.
By the way, part of the battle with T is the anxiety it creates - that is, your emotional reaction to it. If you can keep that under control, half the battle is won - not only for your mental well-being, but your brain will also start to regard the T as less of a threat and learn to ignore it.
Thanks for taking the time to reply to my original post.
The GP did inspect my ears briefly to check if it was earwax or anything like that. He wants me to wait 6 weeks before sending a referral to see if the T goes of it's own accord. I'm already under the hospital for another problem and have waited over a year without getting it resolved so I am worried it will take a long time for the referral to get me an appointment. The burning sensation is in my ear when the T is really loud. At present I'm still very anxious about this and my other ailments it's hard to relax.
Something else you could do while waiting for your GP referral is go to a High-street audiologist and have a hearing test. Tinnitus sometimes appears because of hearing loss within a certain frequency range, with the brain then substituting the sound itself. The standard solution is hearing aids, which work for some people in reducing their T.
By the way, when I said you shouldn't necessarily wear ear-defenders when going outside with standard T, I think it is always wise to wear them in very loud environments, such as concerts and even in the cinema these days.
Yeah I realise my mistake of not wearing protection for the last 30 years at gigs now. I'm not planning on going to any for the foreseeable future now this has happened. I know Specsavers do the hearing tests my GP told me not go as he didn't think it was hearing loss as we could have a normal conversation with each other and I could hear on the phone etc?
I have tried a frequency modulator on recommendation of a friend of my and I noticed around 3000hz it would match my T but some frequencies around there I couldn't hear at all and some I could only hear in one ear or vice versa.
We've all done that - not worn ear-plugs at concerts. It's just a pity the people who put on these events are not more mindful of the damage they may be causing.
I'm not a medical doctor but I don't agree with your GP's opinion. He seemed to be talking about severe hearing loss. People with hearing loss and T can have normal conversations in person and on the phone. You may have mild hearing loss in the upper frequencies or localised around particular frquencies (I think they call this 'notched hearing loss'). The trouble with the latter is that audiogists tend to test at specific widely-spaced frequencies and could miss the relevant frequency.
Re getting to sleep with T, I sometimes go through a relaxation routine in which I tell myself to relax each part of my body in turn - if you prefer, you can get sounds files in which a dreamy voice instructs you do to this. Also, in my experience you shouldn't try to get to sleep thinking of nothing, otherwise your mind will be drawn to the T. Don't think about anything complicated or emotional but give your brain a trivial task to distract it from the T and tire it. Counting sheep is a well-known method but I usually count backwards from 100. If you lose count, that's a sign that you're beginning to drift off.
Thanks for the advice. I thought it was strange for him to say that but he also said he didn't know what the NHS advice for T was when I told him I was following it and that's why I'd come to see him! Last night I managed to get a slightly better sleep but kept waking up coughing but I don't have a cough so this was making me frustrated. Not sure if this is anxiety or what?
try a tinnitus sound app like ReSound GN. It allows you to create your own masking sounds to fine tune to what works best for you. For me it’s a crackling fire and crickets chirping, sounds that are similar in tone to my T which is a loud high pitched ringing. Set it to a volume that’s a little quieter than how loud your tinnitus seems, and focus your attention on the masking sounds. Also helpful is imagining you are somewhere nice, like for me I’m out camping next to the warm fire and I find I drop off to sleep without much trouble. I think everyone feels they’ll never sleep normally again but you can.
Thanks for taking the time to reply to my original post.
I have the app and I'm finding it useful both for the sounds and the mindfulness exercises. The one problem I have is when the sound loops the volume goes up and back down and I find this distracting. Last night I got a little more sleep than previously but every time I nodded off I kept waking up coughing (I haven't got a cough at present in the daytime ) I'm finding this very odd and frustrating but can only think this is anxiety related. Have you ever had this problem?
No I’ve never had that but I’ve had serious amounts of anxiety and depression related to my T. I’m currently on sertraline following a bad patch which has drastically helped my mood/ anxiety and from that my symptoms have relaxed and I’m back to my normal bubbly self. T feeds on your anxiety. Keeping calm and relaxed is so important to reducing your perception of your T. It can change from the sound of a fire alarm in your head to almost unnoticeable depending how you feel.
Good to hear you are feeling better at the moment. I've had sertraline years ago and didn't get on with it too well but if it is helping you that's great news.
I hear that from everyone that it is worse when you're anxious or tired. I've had other facial and dental problems from a fall last year and I think that's why my GP thinks my T maybe related to that event as I am still waiting for an operation on my nose and my teeth give me constant worry and phantom pains from time to time but dentist says they look OK.
In England it seems insane for a GP to wait six weeks to refer you, given you're not going to get in in anywhere near six weeks if my understanding of the state of the NHS is correct. Could you point this out to him and ask for an immediate referral - that could actually be cancelled if your problem did resolve itself. While stress can contribute to tinnitus my feeling is it is not likely to be the single cause of it.
He thinks I already had it but at such a low level that I didn't notice it but now it's worsened as it's got louder and I've got stressed about it.
My friend said the same as you that I should say u is negatively affecting my mental health and can he start the process now. I suppose that they will tell everyone to wait six weeks so I am already in a queue of sorts waiting to be referred.
Yeah the backlogs, lack of investment and chronic understaffing are still a major problem with some wards have to close just through lack of staff.
Unfortunately, as you must know from reading this group, there is no cure for the tinnitus itself unless you are 'lucky' and it actually is stress caused and it goes away. For the majority of people though, once you have it, it's there. Maybe not always at the same level, but there. I think most of us would say that it's a permanent feature in our lives. But you do need to know if there is any underlying condition that is contributing to it or affecting it. The fact you have a burning sensation (is it still persisting?) indicates that something is going on. Your audiologist will check your ears (but is not a medical doctor so if they see anything which looks odd they will refer you right back to your GP probably as a first step), and give you a hearing test. Much tinnitus is related to hearing loss in the high frequencies so it is possible you have lost hearing, especially as you say you went to many concerts and gigs - death to hearing. Good luck.
hello Thinkzs. I wasn’t goi g to respond to your post as so many people have given you excellent advice already, but I’m impelled to add a couple of things.
The first is that you get a good overviews from the British Tinnitus Association website, and help.
The second is that your GP isn’t sure what to do. It’s not entirely surprising, in that NICE (the National Institute for Clinical Excellence) provided guidance for GP’s just under three years ago. And Covid cam along so I suspect many GPs missed the advice. You can look it up yourself by going to NICE website. Put tinnitus into their search box. When you’ve absorbed what they say, and fitted it to your circumstances, you might approach your GP again.
Another point about audiologists and seeing them privately - not necessarily Specsavers. My hearing aids are on the NHS (and they do help me with tinnitus) I visit a private audiologist to get my ears suctioned and he has set up a tinnitus support service. I don’t need it so know no more specifically, but there may be someone similar in your part of the world.
It makes interesting reading hard to see exactly where I fit in but have booked another appointment with my GP and will bring up the guidance with him.
I had a bad night last night as my T wasn't too bad and I got to sleep but when I woke up around 4am it had gone loud. I managed to settle down but had a snippet of a song going through my head and this is still going on now in the morning and it is more annoying and causing me more distress than the T. Is this something that is known to happen do you know?
Hi Thinkzs, sorry to hear you are struggling. I can empathize as this is how I felt when I first got my T. Its good you have an audiology appointment, for me I know it was important to understand there was nothing sinister causing my T. In the same vein, you talk about what may have caused it, for me it helped (once I had ruled out anything sinister/treatable) to try and not focus on what had caused it as some of us will never know, instead I wanted to try and be forward looking on what I could do to manage it.
Once I understood a bit more about my T and the effect it had on me, heightening my nervous system, putting me in fight/flight mode and putting me into a vicious cycle of anxiety (worrying about my T meant I focused more on my T which meant I couldn't focus on anything...) I tried to learn evidence based distraction and behavioral techniques that the BTA, ATA and others with the condition used to live well with their T. I started building a 'toolkit' of these techniques and realised if others had habituated/accepted their T, why couldn't I. The behavioral techniques require constant practice but for most folks these types of techniques help shift how we think about our T which helps eventually to push it into the background as your brain starts to stop seeing it as a threat.
Here are some of the things I used that worked for me but as with everything with T (and your specific behavioral type) its about finding what works for you, all I would say is follow evidence based techniques (I used trusted sources like BTA) as this helped reinforce I was following techniques that are based in science.
Examples of what I did in regards to helping me sleep:
• I used a sound generator app (I used ReSound Relief but plenty of others out there). I mixed sounds that (1) I found pleasant and (2) mapped well to my T. Audiologists tell us to map the volume of the sound to just below the volume of your T. As time went on and I felt more 'positive' towards my T I slowly reduced volume until I no longer needed the sound generator
• I tried to use positive reinforcement in relation to the sound from the generator app. The sound I had chosen was beach, waves, and rain, when I would go to sleep, I would listen to the sound and think of lovely holidays I have had walking on the beach. As T creates such a negative emotional reaction, these types of thoughts allowed me to calm down and think about something other than my T
• When I was lying in bed if I felt stressed and my mind was focused on my T I would follow a progressive muscle relxation and/or breathing exercises. I found this very calming and did take my mind off my T
• I used BTA support group to help me learn more about T and techniques to move towards living well with T. As I learnt more and managed to reduce the negative emotional reaction to my T I would even say 'hello' to my T when I first settled down to sleep. The reason I did this is I found when I was stressed by my T it was always at the forefront of my mind so I found that if I said hello to it then (1) I had acknowledged it and my mind could move on to something else (2) by saying hello I was reducing my fight/flight reaction to it and this helped me to 'normalise' it for me.
• I tried to follow a good sleep hygiene pattern (maintain a regular sleep routine, avoid daytime naps, don't watch TV or use the computer in bed, no caffeine after 18:00 and as I am a clock watcher I put the alarm clock out of sight so I wasn’t constantly looking at it.
• Exercise was also important as this allowed me to be physically tired
Examples of these evidence based distraction and behavioral techniques I followed are below but there are lots of ideas on the BTA website .
• CBT - I found it very helpful and helped me see what types of negative thoughts I was having and how this was affecting my feelings. I found tools such as the APPLE model very helpful as allowed me to – pause, reflect, and reframe negative thoughts. CBT also helped me understand our natural negative bias and gave me tools to manage my thoughts and feelings which ultimately took a lot of power away from my T
• Exercise – Not only does this release endorphins (destressed me) but even if I was just going for a walk I would not only exercise but use behavioural techniques such as active listening where I would listen 'through' my T (this is where you listen for 20 seconds to something in the distance and then listen to something close up for 20 seconds, this helped my brain to focus on something other than the sound of my T and help 'practice' listening to the world around me.
• Video Gaming – Finding a hobby or activity that really makes you focus on something was really useful. I found online gaming really helped me as I was so engrossed in playing the game, I would have periods where I didn't 'hear' my T as my brain was focused on something I was enjoying.
• Avoid avoidance – Often we want to hide from our T and this is impossible so I made sure I lived my life by trying to avoid my T, I would use the distraction and behavioural techniques to ensure I was working a plan which would ultimately allow me to manage my T.
• Don’t mourn my old life - It’s very easy for our lives to shrink when we get T and we wish for things we had in our lives before T. I found this quite negative so I always tried to reframe my thoughts in a way where I was trying to effect the future with T rather than wishing for my life before/without T
• Empathy - I attended BTA virtual support groups, at these groups not only did I learn more about the condition, I learnt behavioural/distraction techniques but also by sharing and listening to others with the condition I felt a great sense of empathy and support which again helped with anxiety and worry knowing I was not alone plus there was hope that I could habituate and live well with my T
• Support Network - I realised that having a good support network was important as not only did this help my stay positive but by also having folks to talk to allowed me to decompress.
• Understand that the more I give my T focus the more I am feeding the T and the anxiety - This was important as when we first get T it takes over our lives but this constant focusing on the perceived noise of our T just made me focus more on it and made me feel down. To try and arrest this focus I would use a combination of distraction and behavioural techniques to take the power away from my T
• Kindness - Having T is tough and it’s not your fault you have so it BE KIND to yourself, beating yourself up will only feed worry and anxiety.
All of this take time, discipline and energy as we are shifting how our brain and nervous system reacts to our T but for me this approach worked and I now live well with my T (which when I first had T I thought I would never say). I hope this helps in some small way, stay safe
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