Please note that the following information presented is only for research/information purposes. We are not in a position to give clinical recommendations to patients. Please consult your physician for clinical recommendations and suitable treatments for your particular type of tinnitus.
1. What is PPI?
PPI stands for Public and Patient Involvement. It is also referenced as PPV - Public and Patient Voice. It refers to people with lived experience of a condition getting involved in the development and implementation of research right through to the end of a project - helping to shape the research. This way PPI makes research better.
2. How often does tinnitus occur with hyperacusis? How are these related?
In a Swedish study with 3645 participants (1984 with tinnitus, 1661 without tinnitus), found that tinnitus and hyperacusis were positively related. Especially when tinnitus severity increases, the odds of increasing severity of hyperacusis was also found to be increasing up to 77.4 times when the hyperacusis is severe. The occurrence of hyperacusis in severe tinnitus was found to be as high as 80%. It is important to keep in mind that this is one study and these results can vary in different populations, but the relationship between tinnitus and hyperacusis is quite tight.
3. How can you join research trials?
If you go to clinicaltrials.gov and type “tinnitus” under “Condition/disease” you will see all trials going on in different parts of the world on tinnitus and the status of each of these studies – recruiting/completed. When you click on each study, along with the details of the study, you should also be able to see the name of the principal investigator and the their email address. You can contact the principal investigator regarding the study.
4. Do you have to be at the research facility to join the study or can it be done remotely?
It depends on the study – if the study requires your physical presence in the research facility, then you will have to be in the facility. If it is an online study, you should be able to participate, depending on the inclusion/exclusion criteria of the study. Please consult the principal investigator of the study to see if you are eligible for the study.
5. Could tinnitus EEG research (or any methods you used to determine the different brain pathways involved in tinnitus loudness/filter mechanisms, etc.) help direct treatment research and help move away from the "trial and error" approach?
That is the hope. For something like this to be possible we would require very large datasets especially given the heterogeneity in tinnitus and for the feasibility of the approach. This is why collaboration between different countries and pooling of datasets, Open Access publications and data sharing across countries becomes key. Data sharing can only be facilitated when the participant agrees for their data to be shared with other researchers inside and outside the EU/EEA area. During the research consenting process, the researchers goes through a set of questions, including whether or not we can retain your data, share your data etc. All of these are your choices – whether you want the researcher to retain your data, share your data, use for future research questions etc.
6. How to find out more about some treatments that Prof. Vanneste talked about?
Prof. Vanneste mentions a paper by Park and colleagues in the Journal of Clinical Medicine that reviews all the treatments that he mentioned. This can lead you to other papers. Other resources that are available are through the different well-established patient organisations – Tinnitus UK, American Tinnitus Association.
7. Has Tinnitus been linked to dementia?
There are different studies that show a different relationship between tinnitus and dementia. While some studies suggest that tinnitus may be a risk factor for cognitive decline and dementia, other studies suggest it could be a protective factor. It is extremely important to keep in mind a few things while reading these papers – (i) these are retrospective studies, meaning that they were not intentionally designed to look at this relationship, (ii) hearing loss and stress are big risk factors for both tinnitus and dementia. However, we don’t fully understand the relationship between hearing loss and dementia even, (iii) we need prospective, longitudinal studies meaning, studies that are designed to look into the relationship between tinnitus and cognitive decline through time.
There are some things we already know about tinnitus and other cognitive factors – stress impacts tinnitus, tinnitus can impair focus and attention which can in turn impact memory. Tinnitus is also accompanied by anxiety and depression. Therefore it is important to try to manage these different symptoms, which we know are risk factors for dementia. In brief, we don’t know what the relationship between tinnitus and dementia is – but it is important to address the different cognitive difficulties that come with tinnitus
8. Can you say more about ongoing research in how the brain is involved in tinnitus and how that can direct treatment/cure efforts? I know you mentioned biomarker research. Can you say more about that at this time?
For a long time people thought that tinnitus was an auditory disorder, however work by different researchers have shown that the brain is involved in generating tinnitus. Papers such as De Ridder et al. 2014, Belen et al. 2015, Vanneste and De Ridder 2012, show how different auditory and non-auditory brain regions are involved in tinnitus. Based on this, different treatments – particularly neuromodulation using electrical and magnetic stimulation are used to treat chronic tinnitus. The search for an objective marker for tinnitus is important to not only identify a treatment target for tinnitus but can also help advocate insurance coverage. Different people are working towards finding a biomarker – a multi-site study funded by the Rainwater Foundation is currently undertaking one study using EEG. Other universities such as University of Antwerp, Bionics Institute Australia, University of Auckland are also in the search for a biomarker for tinnitus.
9. Are there tinnitus treatments being done in Canada?
Yes. The upcoming Tinnitus Research Initiative Conference 2024 will be in Canada. The conference will cover the research going on in Canada and will host researchers from around the world. For further information and updates please visit: tri2024
10. Any recommendations on how musicians can better protect their hearing?
Minuendo earplugs are strongly recommended by musicians when attending or playing any live concerts.
11. Are there any online tinnitus support groups that I can join?
You can join Tinnitus Éire’s Tinnitus Over Tea sessions (ToTs) online. We meet between 5:30 – 6:30 pm Irish Time, every last Tuesday of the month. You can email tinnitus.eire@gmail.com to be on the mailing list. One of the patients suggested that the OTO app has some helpful info and also has a Facebook group. Additionally, there are other Facebook groups and Tinnitus Talk Support forum where you can chat with other people with tinnitus from around the world. https://www.tinnitustalk.com/. The American Tinnitus Association and Tinnitus UK are a few of the most experienced and established patient organisations for tinnitus sufferers who organize conferences from time to time.
12. Should tinnitus be considered a disability where its effects are serious enough?
There is a debate if tinnitus should be considered a disorder/disability. A working definition for tinnitus and tinnitus disorder has been discussed in a recent publication. There is however an ongoing discussion amongst clinicians and between patients and clinicians on the pros and cons of this approach.
13. Summary of research on similarity between tinnitus and chronic pain
Tinnitus and chronic pain share several characteristics. It is hypothesised that tinnitus, similar to chronic pain, is segregated into a sensory component (sound) and emotional component. Chronic pain and tinnitus also impact other psychosocial components such as sleep, focus, attention and concentration. The brain networks that encode distress in tinnitus and chronic pain are similar and tinnitus is attributed as auditory pain. The auditory and somatic pathways cross at the level of the brainstem and possibly why people can modulate their tinnitus percept by moving their head and neck. A recent comprehensive systematic review looked at the relationship between tinnitus and pain – and showed that tinnitus was sometimes accompanied by TMJ pain or headache and those with a combination of symptoms showed changes in the psychological distress accompanied with their tinnitus. Although it is unclear how to approach tinnitus with comorbid pain from a treatment perspective, there is some theoretical indication how this could be taken forward from a research perspective.
14. Summary of research on Vitamin B12 treatments
A retrospective analysis of the UK Biobank shows that a higher intake of vitamin B12 was associated with decreased odds of tinnitus. However, prospective double-blinded placebo-controlled studies that have studied the effects of B12 supplements – either through injections or through oral medication are inconclusive. One study shows an improvement whereas another shows no effect. It is important to keep in mind the small numbers and statistical analyses performed as well. It is also important to note that whether vitamin B12 treatments are directly impactful for tinnitus or not, vitamin B12 deficiency is known to impact the nervous system, blood cells and muscle strength with a range of symptoms including fatigue, irritability, tingling sensations in limbs and sometimes even mood disorders. Irritability and mood disorders we know can impact perception of tinnitus severity. Therefore it is crucial to treat vitamin B12 deficiency in people with and without tinnitus.
15. Summary of research on the effect of nerve blocking on tinnitus
There are a few studies that have looked into the effect of nerve blocking on tinnitus symptoms. Two studies report changes in tinnitus and otalgia with nerve blocking of the occipital nerve, but neither are placebo-controlled. Another study looking at an integrative nerve block of the facial/trigeminal nerve in combination with mechanical stimulation of the vestibulocochlear nerve is shown to have an effect on tinnitus. None of these studies report the side effects and there are not a lot of comprehensive studies done to weigh the risk/benefit and the placebo-controlled effect of nerve blocking for tinnitus, from our knowledge.
16. Summary of research on diet for tinnitus.
From a research perspective, there is not a lot of conclusive evidence on the effect of different foods on tinnitus. Tinnitus and the role of caffeine is under debate and currently inconclusive – while some studies show no effect, other studies show a relationship. A retrospective analysis of the UK biobank showed that moderate-high consumption of caffeine was associated with decreased tinnitus severity which goes against the anecdotal evidence. A case controlled study involving caffeine intake showed that high doses of caffeine did not affect tinnitus, but low doses of caffeine show a protective effect. A review of this literature showed that a complete withdrawal could possibly worsen tinnitus symptoms as shown in a study by Claire et al., however, reducing the intake could possibly aid symptoms as shown by Figurado et al.,. Tinnitus severity has also been shown to be associated with increased intake of salt. Other foods like proteins, good fats and a generally healthy diet is recommended for general wellbeing. Although there is not converging research that demonstrates the role of diets in tinnitus there is anecdotal evidence to switching to a healthy diet with a low intake of salt, caffeine and alcohol and increasing hydration can help improving tinnitus symptoms and general wellbeing.
17. Summary of research on hypnotherapy and acupuncture in tinnitus
A sophisticated review of the literature on acupuncture was done by Park and colleagues published in JAMA Otolaryngology that shows that the research on acupuncture for tinnitus is inconclusive on its effects. There is very limited research on hypnotherapy and we need future research to show its efficacy on tinnitus symptoms.
18. Summary of research on tinnitus and Meniere’s disease
Meniere’s disease is a disorder of the middle ear that is accompanied by vertigo, tinnitus, hearing loss and feeling of fullness and congestion in the ear. Tinnitus is one of the accompanying symptoms of Meniere’s disease. This is a very helpful page on Meniere’s disease.
19. Summary of research on tinnitus and head and neck injuries.
Tinnitus is a common symptoms in different head and neck lesions. In a retrospective survey of tinnitus patients, about 12% of the patients reported their tinnitus started as a result of head and neck injuries. Physical therapy is one the treatments under research right now for tinnitus with head and neck injuries. A systematic review showed that, the quality of studies performed is low, but show a positive effect which needs to be validated by future studies to determine the efficacy of physical therapy for somatic tinnitus. Another treatment under study for somatic tinnitus is bimodal electrical/sound stimulation.
20. Summary of research on the effect of cochlear implant on tinnitus in single-sided deafness.
Cochlear implants have been tested for tinnitus in unilateral deafness. A systematic review shows the effect of cochlear implants of tinnitus suppression over short and long term along with improvement in other hearing features. However, patients in several studies reported that tinnitus suppression did not last when the cochlear implant was turned off.