Understanding the Process of Tinnitus Distress Lucy Handscomb UCL Ear Institute & NIHR Nottingham Hearing Biomedical Research Unit

Tinnitus Survey

How does tinnitus make you feel? “I have felt suicidal with very negative dark thoughts, panic attacks and so on” “knowing I could have this condition for another 50 years is the most terrifying scary thing I can imagine, as it never seems to get better, only worse”

How does tinnitus make you feel? “I find it easy to just ignore it at any time, it has never really bothered me.” “if I listen, then the noise is still there but I can ignore and forget about it.”

“I get annoyed but not depressed with my tinnitus “I get annoyed but not depressed with my tinnitus. When the hissing is very loud, it drives me mad a short while but otherwise I get on with it……But there are times I don`t think of it, as external noise blocks it out. Or your mind is otherwise occupied.”

What makes the difference? Only weak relationship between loudness and distress (eg Baskill and Coles, 1999, Ooms et al, 2012) More severely deaf may not be most affected (Tyler, 1995)

Padesky & Mooney, 1990

In other words….. “There is nothing either good or bad, but thinking makes it so.” Shakespeare: Hamlet, Act 2, Sc.2.

See McKenna, Handscomb et al, 2014 Cognitive model of tinnitus distress See McKenna, Handscomb et al, 2014

Attention drawn towards tinnitus all evening Feeling sad, resentful “Tinnitus will stop me enjoying this evening out”

Additional contributors: Underlying beliefs: “tinnitus is the start of deafness”: Or “I can’t enjoy myself if I don’t feel 100%”

Safety behaviour: Eg: avoiding events Constant background noise

Distorted perception Tinnitus seems louder/ more prominent due to increased attention

Evidence behind different components

Negative Automatic Thoughts Common negative thoughts are: “Why me? Why do I have to suffer this horrible noise?” “I can't enjoy what I'm doing because of the noise” “the noise will drive me crazy.” (Wilson and Henry, 1998: Tinnitus Cognitions Questionnaire)

Catastrophizing correlated with more severe tinnitus distress/ lower QoL (Weise et al, 2013, Cima et al, 2011.)

Unknown Do people with non bothersome tinnitus think positively, or not at all?

Arousal and Distress In general population, tinnitus is a risk factor for anxiety/ depression (krog et al, 2010, Gopinath et al, 2010) Many people attending tinnitus clinics have anxiety/ depression (Marciano et al, 2003, Goebel & Floetzinger, 2008) But not all! Depression/ anxiety associated with more bothersome tinnitus (eg Wallhausser- Franke et al, 2012.)

Arousal and Distress Intervention effects depression scores as well as tinnitus scores Much less known about ‘lower level’ distress (annoyance, irritability, unease….)

Selective attention & monitoring Some studies show differences in attention paid to tones/ tinnitus- like sounds ‘Inability to ignore’ tinnitus linked to greater annoyance (Hiller and Goebel, 2007) TVAQ (Cima et al, 2011) will investigate further….

Safety Behaviour Some evidence of link between avoidance behaviour and tinnitus distress (Kleinstauber et al, 2013.) Beware! Well- intentioned advice may be counter- productive.

Beliefs Control beliefs may influence tinnitus distress(Sirois et al, 2006.) These may apply more widely than just to tinnitus.

Distorted perception Hard to demonstrate- what’s the ‘actual loudness’ of tinnitus? In several studies, tinnitus matched to low intensity tones (10dB)

What can we do about it? Take out the lynchpin! Negative thinking

How can we change our thoughts? “Try not to think about it??” Cognitive Behavioural Therapy Mindfulness Sometimes, information Review of CBT studies shows effectiveness for tinnitus distress (Martinez- Devesa et al, 2010.)

What can you do? Refer to tinnitus clinic Give information Offer amplification Sound therapy

Referring to a tinnitus clinic Mostly NHS- based Access usually via ENT BTA has a list Not only most desperate Talk to us!

Giving information False beliefs? Sources of information? Listen Acknowledge distress Reassure

Self- help recommendations BTA- www.tinnitus.org.uk Book: Living with Tinnitus & Hyperacusis (Baguley, McKenna, McFerran) An online course: http://www.clitheroetherapies.co.uk/Tinnitus-E-Programme--TEP-.html

Amplification Usually helpful: Davies et al, 2014- THQ scores reduced in pts fitted with NHS hg aids compared to controls (not randomised) Byrom & Thyer, 2014- large reductions (~40) in TFI scores post HA fitting in mild hg loss (not controlled) Larger mild hg loss study planned (NHBRU)

How do hearing aids help? Increased environmental sound Less ‘straining to hear’ Reduced stress?

“I have found that when I wear my hearing aid I can almost forget the tinnitus.” but “If I am offered a noticeable hearing aid I will probably have to turn it down and continue suffering”

Hearing aid considerations Consider in mild hg loss if bothersome tinnitus Avoid occlusion May be especially helpful in situations not involving communication

Sound therapy Ear- worn sound generators show little benefit over counselling (McKenna and Irwin, 2008- review) Can become safety behaviour More benefit in hyperacusis? Night- time sound therapy may be beneficial (Handscomb, 2006) Many apps available

Want to know more? Masterclass: Tinnitus and Hyperacusis in Adults and Children UCL Ear Institute, London 20th- 22nd January, 2015