This article was originally published at Restored Hearing Ltd blog.
Neil Curran, Fiona Byrne and Kate Curtis spoke with our own Eimear O’Carroll who was chairing the panel about their experiences with tinnitus. Eimear begins by telling the audience that she is going to ask the panelists some questions, but Eimear urged members of the audience to jump in if they had any questions.
First to be introduced is Kate Curtis who specialises in alternative methods of pain relief (i.e. reflexology, acupuncture and reiki). She does a lot of work marrying traditional methods with alternative methods, particularly with fertility. She has suffered from tinnitus for 10 years.
Next on the panel is Fiona Byrne who has suffered from tinnitus for 9 years. She has had many different experiences while trying to learn how to cope with it, from finding ways to accept it, to looking at more hopeful outlooks.
Finally, we have Neil Curran who has had tinnitus for over 20 years, since he was a teenager. He works in senior management in a multinational. He also does a lot of improv comedy and he is the founder of Improv Fest Ireland.
Eimear asked the panel about their first experience with tinnitus and what their thoughts or feelings were at the time. Neil is the first to speak and he informs us that he was very young when he first noticed his tinnitus. He was lying in bed at night, where many people notice their tinnitus the most, when he heard the buzzing. He initially thought it was something external. When he realised the sound was in his head, there was moments of sheer panic. Neil says that it is a pretty horrendous experience first discovering that you have tinnitus.
It is then Fiona’s turn to tell the audience about her first experience with tinnitus. Fiona attended a Spandau Ballet concert, and the next day she had a ringing in her ears that she was very aware of. It passed after about a day. Then, at Christmas 9 years ago, it came back. She has had it since. She had the same sense of panic as Neil, and uncertainty of what it is. She kept thinking that when she woke up the next day that it would be gone, but it was still there. She says that you look like yourself, there is no evidence that anything is wrong. She says that the noise is challenging.
Kate explains that her tinnitus came after a middle ear infection. She was deaf for about a week, and was on steroids and antibiotics. After that, the tinnitus came on gradually and was intermittent. She says that being a typical acupuncturist, she chased the symptoms down and drove them away regularly, but it has never gone away completely. Kate notices that her tinnitus is linked with stress. When she is tired, the tinnitus is high pitched and when she is relaxed, it is low pitched. She decided that she had to live with it. Kate says that her tinnitus came from the middle ear infection but that she also used to listen to loud noises, for example, she used to ride on the back of a motorbike which she says didn’t help, but it gave her great memories! She did not know that you are supposed to protect your ears with earbuds. She also states that she has chronic intolerance to food which leads to a lot of phlegm which did not help.
Eimear: How do you cope with your tinnitus?
Kate uses acupuncture to treat her own tinnitus because she works in the area and knows it so well. She has treated other tinnitus sufferers with acupuncture, and states that it does actually tone down the tinnitus quite a lot. She states that if it is done quick enough, it can clear the tinnitus, depending on the cause of it. Kate knows one lady in her 70’s who has had tinnitus for 10 years when she decided to go to a Chinese acupuncturist. They use very long and thick needles compared to Kate. She did 12 sessions on a weekly basis, and after the 12th session, she cried for a long time and the tinnitus went. It can be to do with deep stress or trauma as well as damage in the ears. Kate, herself, has not had the courage to put big, deep needles into her ears. That might be the last resort!
Fiona has tried a few ways to cope with her tinnitus. Like Rita Power, who spoke about Meniere’s disease in a previous talk, Fiona also suffers from the disease. She used to have frequent Meniere’s attacks at work which she found embarrassing and debilitating. She would have a few attacks each week, but thankfully now for four years or more, she hasn’t had a Meniere’s attack. She is very interested in alternative medicines and also believes that the way you think about tinnitus affects how you can cope with it. Initially, she tried conventional medicine and said doctors looked at her with a “no hope” face in terms of there is nothing they can really do. She was given a leaflet to just cope with it. Fiona then tried several alternative methods. After being in a dark, angry, frustrated place (which is not her nature) she tried to push through and go to social situations and socialise with her friends, all while finding it really difficult to hear. She then came to a place of a sense of acceptance. She believes that the onset of her tinnitus was stress related. Since she has made a conscious effort to minimise her stress, to think about how she thinks about tinnitus and to get out of her head and make it more of a body feeling and begin to let go of the grip that tinnitus had on her. She has also done some craniosacral therapy which helps her get into the feeling of the body and letting go. She has found this really helpful. Her tinnitus is still there, but her relationship to it has changed. That is what she focuses on. Rather than it being in her face, it’s further away now. “Our attitude and what we think about it and how we engage with it is something that we can control. The noises are there, maybe we can’t control them but we can control how we actually interact with the noises.”
Neil says that he thinks there is nothing in terms of support that’s tangible in Ireland. In the 90’s, when he first discovered that he had tinnitus his local Irish GP (as a family, they lived abroad for years) was very supportive. He knew nothing about tinnitus. He was giving Neil different tablets to help him relax and to suppress his hearing. Most treatments are temporary, he says. Acupuncture had a very positive effect on Neil. When the option of acupuncture came up it was because he had tried everything else. He was very surprised with the results. There was also a herb that he took, that wasn’t a usual herb that people took for tinnitus, but it offered him some relief. Relief is essentially what a lot of treatments do offer. His dark days were in his 20’s when he didn’t think that he would have a quality of life in the future. So he reached out on the internet (back when you had to dial up through a phoneline!). There was a U.S message board and one of the contributors to the board was a doctor called Stephen Magner who ran a website called tin.com. He was a doctor with tinnitus and he was on the board to offer support for people. Many people in their dark hours were posting on this message board, according to Neil, saying things like ‘where is my future?’, ‘I can’t talk to people’, ‘this is not a broken leg’ and ‘people give out to you for going on about it’. He talked about retraining your brain to not see tinnitus as a threat because tinnitus isn’t dangerous, it’s not life threatening. Neil states that it is our reaction, our perception and how we deal with it that affects us. He started to dabble in sound therapy. He still has a sound pillow that you can plug your iPod into and play whatever it is at night. At the time, he used to play stereo speakers close to his bed and he would have white noise or low music at night to distract him. He remembers thinking at the time that there has to be some technology around this that is cost effective. He finds that white noise certainly keeps him distracted, it can suppress the sound a little but it is not going to send it away.
Neil says that the other thing he invested in was routine. He addresses the audience by saying that anyone who suffers from insomnia would know what he means by keeping a bedtime routine. Neil himself takes a very strict view of bedtime – if he’s not tired, he doesn’t go to bed. It doesn’t matter when he has to be up, if he’s not tired, he won’t go to bed. If he goes to bed and he can’t sleep, he gets up. He associates the bedroom with sleep. He uses sound therapy as well but if he senses any anxiety coming on, he gets out of bed and keeps himself busy. He says he knows that people say don’t watch TV, etc. but he says it is nonsense. Anything to get you tired and into a sleep state will help. Stress and alcohol have a big effect on his tinnitus. Caffeine does not affect him as he drinks tea and hasn’t noticed anything. He manages that routine and uses sound therapy as needed. He states that the more you focus on it, the worse it gets. He went through a period where he removed himself from the tinnitus world. He wouldn’t talk to people about it or talk to other sufferers about it because it reminded him that he had tinnitus and that it is not going away. He says that it was a solo journey because there was nobody really to reach out to. The Irish Tinnitus Association were around back then but they were not easy to access. He has had tinnitus for over 20 years now so over time he has been able to go from ‘I’m surviving’ to ‘I’m coping’ to ‘I now have a normal life’. He still has that routine now but just something he does now like getting up in the morning and brushing his teeth. It is not a chore and it is not a struggle. That is how he has come to terms with it.
Eimear: We conducted a survey a while ago where many of the participants think that their doctors or audiologists don’t know enough about tinnitus and didn’t feel like they could help them sufficiently. Has that been your experience? What do you think can be done better or where can healthcare do more?
Neil says that support is a big thing. He visited an Ear Nose and Throat (ENT) specialist when he was 21 or 22. His mother attended the appointment with him because she didn’t fully understand tinnitus. He explained to the ENT what he was going through. He had a very cold approach to it. He was dictating it to his dictaphone as Neil spoke. Neil’s mother broke down and cried because she had no idea about what he was going through as a sufferer. He had his ears tested and was sent for a MRI among some other tests. A couple of months later he received a letter from the ENT stating that they “were delighted to tell you that you don’t have a brain tumour” and that was the end of his experience with the ENT. That was what you were up against. According to Neil, most GP’s don’t have tinnitus, they don’t understand it and because it is not life threatening, they don’t treat it in the same fashion which Neil thinks it needs to be which is support.
Kate says that there is one thing that really helps the noise go down. There is a combination of acupuncture points that are all along the back that if they are put in a certain way they help to stretch the neck up and release the tight band of muscle at the back of the neck which many develop as they get older. This means that the whole channels of energy and the nerve supply changes. She remembers when she first did it, the noise went. That is pretty profound, she states. Kate had difficulty with the structure of the neck while she was being birthed so she has always had pains around the back of her neck. Recently, she was at a seminar and there was a guy there that had a long, gold probe. Kate was so blown away with what it did, she is going to order one! It is like a very thick acupuncture needle with a gold plate and it removes scar tissue. He has had incredible results with women who have had cesarean sections and those kinds of things. Kate knows that she has scar tissue that comes all the way down the side of her neck from infection so she is going to try that. She never gives up. She still thinks that there is going to be a cure. If she hears of something that she thinks will be useful then she will try it. Even if it doesn’t clear fully, she would love for it to just go down a bit because it is quite high at the moment. If Kate is tired, her tinnitus goes right up. She would like if it was at a lower level consistently. When it shoots right up, she can’t hear very well and she has to turn the TV up. Her hearing comes and goes depending on the level of noise.
Fiona has tinnitus related hearing loss. She was born with perfect hearing, had no problems with her hearing until 9 years ago. It became a massive issue for her so she admires Neil in his management role in an international company! She says that there was a lot of loss around the tinnitus. She has no hearing really in her right ear and she has 30% hearing in her left ear, so she wears a hearing aid. It was a big adjustment for her to get used to wearing the hearing aid, but she would be lost without it. It makes a huge difference to her, she can now be in the world, in a relatively normal way. She can now enjoy music again. She is a sociable person. Being in a conversation with friends when you can’t really hear what they are saying, and she thinks she hears one thing so she begins going off down another road of conversation that wasn’t what they were talking about. If she was in a group where people would be laughing, she would laugh because it was obviously funny even though she couldn’t really hear. There is a lot of distancing and isolation that goes with tinnitus. Fiona would be a believer of what attitude she would bring to it and what help can she get. Similar to Kate, she suffered complete restriction of the upper back, neck and around her face and neck. She felt like she had steel rods in her face it was so compacted. She did lots of different therapies, e.g. craniosacral therapy. Only in the last year is she feeling any sense of relief. Stress is a massive trigger for Fiona. At the moment, her tinnitus is at a level that she can hear it but it is tolerable. Self care is really important, she says, so when you know you have your routine that works, that is what you do. When you know that it is stressful for you to be in a particular environment, you mind yourself around going into it or you support yourself. Tuning into responses and knowing when it actually can spike, e.g. after too much alcohol, too much coffee, not having fun or not letting go. She says it can be something that can overwhelm and it is about giving yourself the support to navigate it so it doesn’t take over your life. She says that you go through times where (especially at the beginning) you experience sadness, darkness, where you are very much on your own with it and you don’t want to harp on about it. You find a way feel better. People come into your life, you hear of certain things and you try anything. Fiona thinks that you can use the power of the mind to be able to accept it, so you can cope with it.
Eimear: I’m sure we have some people with us in the room today or who will watch the videos later who have just been diagnosed with tinnitus, after having other issues (e.g. brain tumours) ruled out. What piece of advice or what would you say to someone like yourself who just found out that they have tinnitus and they are just starting to get to terms with it?
Neil says to not panic! It gets darker before it gets brighter. It is a bit like a bereavement in a way, he says. Until you are willing to accept it, your lifestyle isn’t going to improve. Explore the therapies that are available. Different people say different things about different therapies because there is different reasons behind why they have tinnitus so explore those options. He wouldn’t necessarily be saying that the first point of contact is the doctor as someone who is going to help you because that made him feel worse. Don’t panic, reach out to people who know what they are talking about and take it from there.
Fiona advises to try and stay calm, it’s the last thing you think you can do but it is possible. She ended up talking to a U.K based craniosacral therapist who is also a core process therapist so he basically works in the Buddhist tradition in terms of self care. She used to Skype with him once a week. He has had tinnitus himself for 20+ years and he written an e-book on understanding tinnitus. The reason that tinnitus can present can be different for everyone, it can arrive for different reasons for different people. For Fiona, her Skype sessions with this man really worked. He helped her to accept it through their sessions. His book is all about turning tinnitus from a tyrant to a friend. So what is tinnitus trying to tell her? At the time her lifestyle was very busy. She lived her life going from one thing to the next, thinking that she was enjoying it. That actually isn’t her personality, when she thinks about it. It is almost as though tinnitus has allowed her to come back to who she really is. So in a way, she says ‘yay, tinnitus!’, although she would have liked to get there without tinnitus. The therapist has a page in his book which gives you different ways of recognising different stages like anger and frustration to acceptance and calmness. For example, the book is telling her to slow down so she can become much more aware of herself. Fiona thinks that in the world we are living in now, people are becoming much more self aware and more mindful. For her, it is a really nice way to approach managing her tinnitus. The therapist has been the most helpful person on her journey with it. She hasn’t physically had a craniosacral session with him but it was the Skype sessions, the book and it was his understanding. That made her feel great because somebody gets it. That’s where the work started for her. It’s everyday, you live with it. She states that it is nice to see ‘our experience with tinnitus’ rather than ‘our struggle with tinnitus’, it’s their experience because they are experiencing it.
Kate says she thinks it would be interesting to do a bit of research about forceps deliveries with babies whether that might be something. She is a midwife originally and she says the forceps go right around the head and a lot of babies were born with forceps in the old days because the mothers were given chloroform to make them go to sleep so sometimes they had to be lifted out. The forceps is a very tight grip so she thinks that would be an interesting one. Sometimes there is a different reason for it, even further back. She found that hypnotherapy was good, also soothing through the self prognosis and mindfulness which she says is a new coined expression. She says it is really about Buddhist type of meditation. It really calms the central nervous system and make the agitation come right down. Kate asks the audience if any of them have problems with their necks or around their heads. She says that it can come from different things like food intolerances. Craniosacral is a therapy that is like an osteopathic treatment, Kate has had lots of it over the years, and thinks that it is amazing for extending and opening out the whole back part of the neck and that reduces the sound and makes it manageable and sometimes takes it away. She says that it is worth chasing some of these therapies if you haven’t had it very long. Some of them can actually stop it if you get it done in time, depending on the reason why you have it.
Fiona agrees with Kate and says when you get it, your instinct is to try and figure out what you can do to get rid of it. She went through so many therapies, she spent thousands of euro and was determined to get rid of it. She thinks it is quite a personal thing where one treatment can be successful for one person and not for another, e.g. acupuncture was successful for Neil and Kate but not for Fiona. It is about finding the right route for you and Fiona thinks that is part of the process. Also, she says that looking at how you are in yourself can help because her tinnitus was a stress response.
Eimear: I’d love to focus a little more on something you (Fiona) said there about the positive aspect of tinnitus bringing you back to who you really were. Talking about experiences and not suffering – something I think that has been a common thread through a lot of our talks today, more of a positive outlook and trying not to focus on the negatives. Neil and Kate, I don’t know if you have any particular piece of positivity that you found came to you through tinnitus? Obviously, it is a terrible thing to have but is there something good that came out of it?
Neil says that on a very basic level, he has learned that you have to make the most of every day because tomorrow could be a bad day with tinnitus. He rides a motorbike and he enjoys music so he goes to concerts but wears ear protection. He is involved with improv comedy which is a way of finding mindfulness and being in the moment without having to meditate, he can’t meditate because he just hears ringing when he does. It taught him to make the most of everyday and he doesn’t mean that in a morbid way. Because he has developed a routine, things like fitness and exercise are an important part of that. Having goals in life so that you are not coasting through life constantly aware of the sound is important. It gave him a drive – if he was going to beat it, he was going to live a better life. That came out good for him.
Kate has a very strong inner drive, it would be typical of her to not sit down until after 10 at night, she would still be pottering around having done 3 jobs that day. She uses her tinnitus as a marker now. If the noise goes up a little more she will say ‘that’s enough, you’ve got to slow down’. She completely ignores it these days, except if it goes up. It is up at the moment because she was working last night doing some work with a little girl. It is up because she was awake all last night and she slept during the day but it was not the right sleep. She rarely does this and she couldn’t do it very much because it would really affect her. She states that it is kind of like a marker for your internal nervous system. She has a son who is 20 and he told her very happily recently ‘at least you can hear when you have the tinnitus, when you can’t hear anything is when you have a problem’. At least it is a marker. She says that she has made friends with it. She was obsessed with it. She didn’t know all of the things that Neil found out about it. She went on a major journey on different levels and she found out a lot about herself which she would never have found out. She says that it is extraordinary. There is a reason for everything and everything that we have (emotionally, physically, spiritually) is linked – there is no separation, according to Kate. Depending on your belief systems, there is a reason why you have it, says Kate. For some, it will go so don’t lose hope, she tells the audience.
Neil adds to that by saying that we have talked about things that can affect tinnitus, but he stills rides a motorbike and he stills goes to concerts, so the things that the doctor will tell you written off the back of a pamphlet that say ‘don’t go to loud music’ etc. He says that in a way, you don’t allow it to change your life, you just get on with it. Like Kate, he knows what his normal tinnitus levels are and if it goes above that, he’s stressed. Stress is an interesting thing because you can be stressed without really accepting or knowing how stressed you are. Tinnitus is a good way of letting you know that you need to slow down, take a day off, get a massage or do something. It is important to be familiar with your tinnitus.
Fiona agrees with what Kate and Neil have said – it is about making tinnitus your friend and asking yourself what do you need to learn in this? What do I need to do here? Do I need to slow down? She says that letting go is a big thing. In the book, he talks about how there is certain characteristics in tinnitus and people who experience tinnitus. They are generally quite driven, motivated, do a lot in their day, push through, all of that sort of stuff. She says that it is about asking yourself what is it that I need to learn here, what is my body trying to tell me and turning the tinnitus into your friend.
Kate has a lovely story about a man who went to her for years for acupuncture. He told her that he had tinnitus for a long time and it is buzzing in his ears. In Chinese medicine, they take the pulse and that shows them the different levels of energy in the system and what is going on. She followed whatever his pulse would be each time and consistently, the needles that she used were for opening the heart and treating the kidneys so the kidney and heart energy together. After about 10 sessions, he said to Kate, when he was at home one night, that he had gotten an email from a brother that he hadn’t seen for 25 years who had left when he was 16 and had never come home. The brother decided that he would contact him. They arranged to meet. Guess what happened then? His tinnitus went! Like the lady that she had spoken about earlier when the tinnitus left after the deep prang into the center of her heart, that was a huge heart pain. Kate thinks that she may have the same thing and is hoping that someday she will find a tool to access that. She says that it is such a deep place that we can’t get to. It is very hard to get to as it is such a deep, hidden place in ourselves. She thinks that the tinnitus is sometimes there to show that there may be something that we may need to look at that is so deep inside ourselves. It is a journey that you might go on, or you may decide to just deal with things on the surface and learn to cope, and that is ok too. There is a way of doing that, according to Kate.
Eimear: There are a few minutes if there is anybody in the audience who have questions that they would like to ask the panel?
One audience member asks about the different sounds that people hear. He says that he hears a hissing sound and asks if that is typical. Neil says that he hears 3 sounds. His left ear is more dominant so he hears a hiss, a ring and when it is quiet he can hear a rumbling as well. During the daytime, it is more of a hiss or a ring. The bass rumble is the most unsettling because, like when a bass speaker is loud and very powerful, it almost like you can feel that in the ear. The audience member says that his is high, medium and low.
Another member of the audience says that he has two different sets of sounds that come at different times. When he shakes his head one way, it is like a bell ringing in his head. When he shakes his head up and down, it is a different bell ringing in his head. He doesn’t know if it is to do with blockage or maybe just stress related. He often wonders why there is two different forms of tinnitus in both ears. Kate says that he may have two different reasons for having the tinnitus. She says that she only has very slight occasional tinnitus in her left ear, it is mostly in her right ear. She has three different sounds as well. In her own knowledge of chinese medicine, if it is high pitched it is to do with, what they call, liver chi stagnation. It is deep, deep stress, like fired up energy and that causes the tinnitus to go right up. When it is a low noise, it is the background noise, it is there all the time. There is another noise that is in between those two, that is when you are exhausted, entirely burnt out and you need to rest. That would be called kidney chi deficiency. That is the baseline energy deficiency. When that is treated, whatever way you do that whether it is meditation, craniosacral, acupuncture or massage, or just a good sleep, that noise actually changes. That is the one you can change. Some people say that the high pitched tinnitus can come from a chronic infection, like a sinus infection that goes into your middle ear. That can be part of that high pitched noise.
Fiona hears jet engines, she has been in the airport 24/7. It is in her right ear. There was a time when the tinnitus moved into both ears and that was very difficult for her. She can function when she has it in only one ear. She says it must be very challenging for people with it in both. She has had it in both but it has since dissipated in her left ear, but it is still in her right ear. It will spike when she is stressed, but most of the time, it is background noise now and it is manageable. She needs subtitles when she is watching TV now, because with her hearing loss, speech discrimination can be difficult for her with different accents. You learn to give yourself the tools that you need – you go into a restaurant, you ask for a table against the wall or a quiet table so that you are not knocking your social life on the head. In a restaurant, Fiona would always say that someone in the party wears hearing aids so can they have a table against the wall. Everybody is really helpful, according to Fiona. There are things you can do to help yourself – if you are at party, make sure your back isn’t to the center of the room because, especially for Fiona, it is like somebody throwing 20 items at her and she is never going to catch them. If she is having a one on one, she will actually be able to interact with the person. There are things like that that you can do to help yourself in busy environments, making sure that you always have a mask or a buffer. Telling her friends and family and being honest with them was very hard for Fiona. To actually say ‘I really have difficulty hearing’ especially when she started to wear her hearing aids to say ‘I wear hearing aids so if I have to ask you to repeat stuff, it’s to make sure that I have heard you’. There is a lot of honesty, being honest with yourself and everybody is totally cool with it – they repeat if they have to, they have no problem sitting wherever you have to sit in a restaurant so that you can actually enjoy the evening. It’s things like that – helping yourself and being honest with yourself.
Eimear: I think that’s a really lovely note to end on. I’d like to thank Kate, Fiona and Neil. They have been fantastic.
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