Onset of T: I had moderate T for about 3 months... - Tinnitus UK

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Onset of T

Greenandblue profile image
14 Replies

I had moderate T for about 3 months, apparently triggered by SSNHL. Then, 2 weeks ago out of the blue the T exploded in my head. I now have a very loud high frequency tone continuously in my right ear and more irregular noises in my left ear. When I say loud, I mean on a par with sitting in a car with the alarm going. I also now have hyperacusis. Now the left ear T is also getting progressively louder.

I get 2 hours sleep with a sleeping pill and am beginning to feel suicidal. I have started CBT and meditation to try to reduce my sky high stress levels. Can I ask 2 questions of you all? First, my Dr suggests the T will “settle down after a while”. Is he giving me false hope or is this common? Second, is habituation at all likely with such loud T?

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Greenandblue profile image
Greenandblue
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14 Replies
doglover1973 profile image
doglover1973

Hi G&B. I'm so sorry you're feeling this way. You can ring the BTA helpline if you need to speak to someone in person. I found them a lifeline in the early days. The lack of sleep is very tough. I remember it well. Onto your questions . I don't know if T itself settles. Mine is still just as loud a year on. It seems to be the mind that settles so you 're not so sensitive to the sound. By all accounts anyone can habituate to T regardless of the volume / pitch. I hope this helps. Other people may ahve other perspectives.

Greenandblue profile image
Greenandblue in reply to doglover1973

Thanks doglover1973, I hope you are right!

doglover1973 profile image
doglover1973 in reply to Greenandblue

I hope so too. I'm hoping to fully habituate one day. All the best G&B !

Happyrosie profile image
Happyrosie

I would say that your perception of the sound settles after time - but as doglover says, as you’re feeling so stressed a call to the BTA helpline is a good idea. Meanwhile I’m convinced that CBT etc will help you,

Greenandblue profile image
Greenandblue in reply to Happyrosie

Thanks Happyrosie, I hope you are right! I called the helpline, they echoed what my dr said. Hope they are right!!

surreycccfan profile image
surreycccfan

Sorry you are having a hard time, I can empathise as your experience sounds very similar to what I went through. First off if you are feeling suicidal can I encourage you to speak to a professional such as your GP or organisations such as Samaritans samaritans.org/ (Phone - 116 123 and Email - jo@samaritans.org) and/or Mind mind.org.uk/ (Phone – 0300 123 3393 or text 86463 - Email info@mind.org.uk).

I know when I first got Tinnitus I felt in crisis and totally desperate. If I can offer any hope then I would say I am living well with my T and have good periods of habituation.

In regards to your T settling down, it may or it may not as everyone’s T is different (mine is the same constant high level pitch). I think what you will find is your emotional response to your T WILL settle down. When we experience T our bodies go into fight/flight mode and this heightened state increases our anxiety which can then increase out T and we get in a vicious cycle of being anxious and focusing on our T constantly. Moving towards habituation (for me) was levelling out my emotional reaction to my T and eventually accepting that I had it and that I had to manage it rather than it managing me. I got to the point I am today by attending BTA support groups and learning about the condition, learning distraction techniques and behavioral techniques which helped me reframe my negative thoughts and how I felt and reacted to my T. As HappyRosie says, I suggest you give the BTA helpline a call as this is a great first point of call to next steps and support.

Just a quick one on your GP, have you had an audiology/ENT appointment? If not then I suggest you ask to be referred. Not only will this give you a diagnosis but also allow you to get a management plan in place. Clinicians should be following the The National Institute for Care & Excellence (NICE) guidelines on Tinnitus (nice.org.uk/guidance/NG155), it’s a rather lengthy document so I suggest you look at this flow diagram in the supporting information (nice.org.uk/guidance/ng155/... which shows the treatment options but also most importantly on the second page that you should have a management plan in place.

In regards to sleep, I posted something on this yesterday for someone else struggling, I have copied and pasted below.

• 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 mindfulness body scan. 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.

Greenandblue profile image
Greenandblue in reply to surreycccfan

Thanks surreycccfan for your valuable suggestions, it is much appreciated.

Happyrosie profile image
Happyrosie in reply to surreycccfan

Surreycccfan - what a helpful post! Thanks!

Allgie profile image
Allgie in reply to surreycccfan

Great post and absolutely spot on 👍

bridgeit profile image
bridgeit

Hi Greenandblue. I think there's some excellent advice already posted for you from others, so I'll keep my effort brief. I'm not medically trained but do have tinnitus.

First, please do call the Samaritans on 116 123 if things are getting too much any time day or night. Talking to someone who will neither judge nor dismiss your distress and frustration might help reduce both.

Second, be aware that many drugs exacerbate tinnitus (T). Common over-the-counter drugs can be 'ototoxic', i.e. sneaky T amplifiers such as aspirin and paracetamol. Sleeping pills (benzodiazepines) and steroids, such as prednisone, that are sometimes prescribed for SSNHL are also ototoxic, as are many anti-depressants. So, if you're on meds, they could be heightening T symptoms. Don't stop taking prescribed drugs without speaking with your GP about risks and alternatives! I just think it helps to know that noise can be worsened when taking necessary medication.

Third, relaxation is key to both calming anxiety and managing symptoms. I've been trying cranio-sacral therapy recently and I'm finding it helpful. I think the therapy is largely managed breathing and meditation, but every little helps.

Nothing 'cures' T, but anything that works to help us relax, especially helping with sleep, I think is worth trying. Take a look at Dr Jeffrey Thompson's Delta Sleep sounds for sleeping at night. These sounds work for me, they might help you. amazon.co.uk/Delta-Sleep-Sy...

It takes time, but habituation is possible. You are not alone in thinking that habituation isn't going to happen for you: it's ridiculous; the T is too loud; it's going to drive me insane, or worse. Many of us have been exactly where you are now. Truly, we have.

I hope you soon find your own route through the tangle. The path is individual for each of us.

Greenandblue profile image
Greenandblue in reply to bridgeit

Thanks bridgeit. I will remember your last 2 paras especially.

Matt489 profile image
Matt489

Hi G&B.

In a word YES, it will get better as the Doc says.

You are in the early days part when it comes to Tinnitus and Hyperacusis, the H is treatable and can be improved, some people even say it goes completely.

You are already on the road to tinnitus recovery as you have started CBT which in my opinion is one of the best self management tools there are, it will help you understand the mechanism of tinnitus, why it does what it does and how you can help yourself overcome the challenge. Your brain is an amazing thing and will adapt to the sounds,however loud, pitch, intensity, pattern etc, YOU WILL get there, it's not instant but it will happen but you must allow it to happen and not fight it, fighting tinnitus is a fast train to nowhere and only gives it importance and keeps you in the loop, your brain will turn down the volume or perception of T, if you allow it to.

Your CBT will teach you how to do this and like the rest of us, it will fade into the background and become your normal.

Thoughts of suicide are very common with the onset of tinnitus,please you are not alone with those thoughts but please talk to someone about it, sometimes that is all it takes.

I'm an old timer I guess with T, I got it when I was 18 and now I'm an old crumbly 48,however the best parts of my life have been with tinnitus in it, tinnitus is part of you and me, not you or me are part of tinnitus. Each day is a step closer to your goal, one step at a time, you will get there.

Always have hope because hope is all you need.

If I can help any further,just message, you are not on your own....YOU HAVE GOT THIS🙂

doglover1973 profile image
doglover1973 in reply to Matt489

Great post Matt. Very encouraging! Thank you.

Happyrosie profile image
Happyrosie

Thanks, Matt, for this very helpful post.

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