Hello, I woke in the middle of the night last February terrified with a loud noise. It took me a few months to figure out that the noise was in my own head as it sounded like a heat pump mechanism. Doctors didn’t even think to ask me if it might be tinnitus. They looked at me as though I was having auditory hallucinations. I realised it was tinnitus just when I went away to a different town and the noise was still there. Anyway, I’ve been living with the knowledge that it is tinnitus since July. At first it was a relief to realise what was going on but since then, my anxiety levels and mental health have been getting worse. I do think it’s pulsatile tinnitus because I can hear my heart and the sound gets faster and louder whenever I have exertion. It’s causing me to have difficulty getting out of bed in the morning and lose my interest in things that normally bring me joy. My happy place has always been silence and meditation and I no longer have it. I feel bereaved. Please tell me that there is hope and that it is possible to live a full life with this and to eventually make space for it and integrate it as just another part of me and my experience. Please no negative comments; I’m pretty fragile right now. I really need help and encouragement from others who have walked the path before me and found a way to not let it take over their life or take away their will to live.
An audiologist confirmed my ears and hearing are good. On a waitlist for an ENT.
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Bebelle
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bebelle, everyone here has suffered from tinnitus and knows what you’re going through. You can glance through posts here and see lots of helpful comments. Bear in mind that a large proportion of the population has this (though not your pulsatile tinnitus) and that proportion of the population has got through it and mostly out the other side.
A word of warning if you are trawling the internet - any cures you see are as helpful as dragons breath but more expensive. And that’s the only negative comment I’m going to make.
There’s lots you can do to help yourself and the best source of information to start you on this journey - and it is a journey - is via the British Tinnitus association website. I’d recommend you give their helpline a call (Monday to Friday 9 to 5) to get direct personal and expert help from those who have gone through this, and there are several books we can recommend too if that’s how you like to get your information.
Not all doctors are helpful - which you have found out already by the looks of it. You might like to look at the National Institute for Clinical Evidence (NICE) website - put tinnitus into their search box - to see the pathways that doctors are recommended to use. My own docs were certainly unhelpful but the person who clears my ears by suction, an audiologist in private practice, himself runs a help group and there may be one near you. Again, the BTA website is the place to look if you are in the UK.
Other posters may put their own take on your post - they are all nice helpful people in my experience!
Thank you for your kindness and support. Unfortunately I’m not in the UK and can’t find a similar association where I’m based. Thank you for the tip about bogus ‘cures’. My instinct is to make sure there’s nothing underlying this (head MRI) and then find as many resources as I can to build up my ability to come to terms with and cope with this situation. I will explore the resources you mentioned. May I ask if you came to habituate to your tinnitus. Stories of others overcoming give me strength and hope.
you are certainly on the right lines to exclude anything sinister.
The British Tinnitus Association is the best charity internationally apparently, so though you might not be able to speak to them (though there’s a webchat facility in working hours) the information they give is worldwide applicable.
I’m going to suggest a book
Tinnitus: from tyrant to friend, by Julian Cowan Hill.
You can get it as a kindle download or even a physical copy.
Hello, Did you have the MRI? Did it affect your tinnitus? Make it worse? I have tinnitus too and have had it for years. I often hear hammering which I initially thought was carpenters building a home a long way off. I eventually understood it to be my heartbeat. I also have ringing. Yesterday a pain dr. (for another issue I am experiencing) requested that I get an MRI of my head and neck. I am concerned that the noise will make the tinnitus worse.
Hi ...I have pulsatile T in my left ear ,had it for almost 2 years now.i have never seen an ENT person only my gp who aranged a MRI to rule out acustic nuroma which came back clear.i have learned to live with this noise very well by taking propanol this drug for some reason calms my T and I hardly know its their now.i did have a hearing test and was found to have mild hearing loss in both of my ears which aparantly can cause the dreaded T ..hope you find your way with T but rest asured you are not alone .X
good afternoon Bebelle, Things will get better and easier for you , I have adjusted to mine , hasn’t been an easy road I must be honest , some days are better than others. I have found things have been better since I have learnt to accept that this is now going to be a part of me. Going out in the fresh air with my two poodles and listening to the wild life, trees , birds and chattering to people, just enjoy living your life, you have to carry on you see or else the T will beat you. Radio, TV, keeping busy helps, relaxing then just happens, I sometimes have to lay my head down to release some head pressure, but then your already to carry on again regardless.
Thank you. You have a very positive and encouraging outlook. This really does give me hope. I also find that nice music, nature, staying occupied, avoiding anything negative such as the news, all help. I’m very interested about what you said about the pressure in your head. Is this a common thing with tinnitus? I’ve been experiencing this and I didn’t know if it was Common. My left ear feels like it has pressure in it and sometimes there is a band of pressure around my head. It’s especially so when I’m very tired or anxious. I also noticed that when I lie down, it gets better. I just didn’t realise this happened to others. Do the two often go hand-in-hand to your knowledge?
in answer to your question to me, I do not know . I have been trying to find out myself about head pressure. I do not believe that many tinnitus people have this pressure that you and I appear to experience and describe, that said many other people have their own symptoms of which I don’t have, so therefore it’s swings and roundabouts. My tinnitus is low sounds like a fan oven going continuously , I find I can sleep with this. I don’t have the high pitch sounds or the loud shrills others describe.. definitely don’t let yourself get too tired. Please keep in touch and let me know how things go.
thank you. I certainly will. I’ll try to get an answer.
Mine sounds like an idling car motor when turbulent and like an appliance compressor (fridge, air conditioner, heat pump) when calmer. All include my heart beat clanging layered over it.
It is always sad to read about new recruits to the tinnitus club. People do get used to T (it's called habituation) and manage to lead contented lives.
You say your T sounds like a heat-pump. I'm not sure exactly what that sounds like but it is not uncommon for T to sound like real things. I sometimes get T that sounds like air-conditioning, particularly after being exposed to certain sounds such as traffic noise, and my neighbour tells me that her T sounds like a water-tank filling up. Perhaps T that is like a real sound is actually easier to live with than the screeching and whining that many of us experience. People are sometimes advised to befriend their T and associate it with a pleasant image - for example, a whistling may be associated with a boiling kettle on a stove in a farmhouse kitchen. You think your T is pulsatile - you should be able to check whether it's synchronised with your pulse. Something else to check is whether any medication you're on has T as a side-effect.
At the moment, you're obviously anxious and giving your T a lot of attention. As you begin to accept it and pay it less attention, it will probably become much less noticeable, although it may be unrealistic to expect silence. The usual methods to take your mind off T are masking and distraction through sound machines or the radio. If you're into meditation, a lot of people say that it helps their T, so that may be something to look into. T is one of life's challenges (and a horrible one), but I'm sure you will get through it.
Thank you for your helpful and supportive reply. I love how you reframed the narrative about it possibly being a little bit of a blessing that my tinnitus manifests as something in the real world. I hadn’t thought of it that way and it’s interesting and could be a positive way for me to start thinking about it. Yes, I live in Canada and we have big heat pumps with compressors and that’s what mine sounds like. I suppose it would be a little bit similar to the compressor in a fridge or a air-conditioner. That’s why I was so confused at first because we are surrounded by these machines. I thought a neighbour had one that was about to die and making an extra loud noise.
I have been listening to a lot of nice music and ambient sound and that helps. I struggle most with the silent alone times. That’s when the fear and anxiety grips me most. A sense of “oh my God, how the hell am I supposed to live with this?”
I’m interested that you say that other people have also found meditation to be effective in helping them to live with this condition. I’d love to find others and talk to them about their particular kind of approach. Perhaps it can be an object of curiosity and a point of focus rather than something to have aversion and fear of. I need to figure out how to down regulate my nervous system response. I’m actually already at the point of accepting that this noise might not go away. I would be content to simply be able to be with it without feeling fear, depression and anxiety. For it to just be another part of my internal landscape, albeit a weird one.
It might be worth creating a new post to ask about how meditation helps T. I have seen so many people say in their BTA stories that meditation helps them cope with T but I don't know how, as I've never properly practised it. I did read a mindfulness book (but not really for T) and found the associated guided meditation CD quite comforting. I can direct you to the sound files on the web, if you're interested.
It seems that your noise is like the sound of a motor somewhere in your neighbhourhood. I do experience noises like this on and off. I went through a phase of waking up to a whirring sound and thought that the neighbour I am joined to had installed a device that came on every morning. It is easy for me to say but I think during your quiet moments you may have to take the attitude "Oh, there's my neighbour's heat-pump again. I suppose I'll have to put up with it".
You mentioned in another reply that you've also had pressure in one ear and it improves when you lie down. Your symptoms seem similar to what I went through a few years ago.
One evening, I switched off the TV and heard what I thought was the engine of a car outside. But then I realised it was in my head, in my right ear. When I put my hand over my ear, the sound got louder and I could hear it as a vibration - something was physically moving in my ear and my hand was reflecting the sound back into my ear, making it louder. It might be worth you trying this to see if you have the same thing.
This was the start of a whole phase of T spikes and ear pressure/tension for me. The vibration was usually faint but sounded like there was some kind of motor going in the next room, like a washing machine. I believe it was one of the muscles in my ears vibrating. The take away is that this particular problem disappeared after a few months, so it's worth checking whether you have something similar.
Wow, it’s like reading about my own experience as you describe yours. Exactly as you said, it’s like an engine motor in my head along with the vibration. When I put in an plug-in or cover my ear, it amplifies the vibration and sound. It feels very somatic. I felt a bit silly that for five months I was convinced there was some kind of new industrial machine in my neighbourhood making noise. I had no clue it was my own skull or brain doing it.
That’s encouraging to hear that that particular aspect of yours went away after a while. I also like your idea of just considering it has a weird machine that’s making a noise next door or in the neighbourhood. I think it does make a difference the stories we tell ourselves. Far better to have a harmless gentle one than the catastrophic ones that I’m telling myself these days.
Also a good idea to start a thread on meditation for tinnitus. My instinct would be that it would be helpful to disentangle the sound and vibration itself from the stories I tend to attach to it. If I could learn to think to myself it just a sound rather than go down the rabbit hole of linking the sound to negative stories and scaring myself half to death, I think that could be helpful.
If the sound gets louder when you cover or plug your ear, you may not have the more usual subjective tinnitus like many people here have, but an objective tinnitus that could in theory be detected by a doctor. Of course, normal tinnitus may appear to get louder if you plug your ear, as you exclude external noise. But if you can detect a physical vibration, this suggests to me that it's a muscle spasm, or possibly pulsatile tinnitus, although I am not a medic. The vibration I had wasn't connected to my pulse and I always thought it was muscular in origin. There are apparently two key muscles in the ear. As I said, it did eventually disappear of its own accord but I have since experienced occasional ear fluttering and twitches (actually in both ears, but not at the same time). I have thought about anti-convulsants, which may be something for you to ask about if yours turns out to be muscular. I've also discovered that electrolytes (sodium, potassium, calcium, magnesium) in the body have a bearing on muscle spasms, so it might be wise to get those levels checked out.
My doctor listened to all my neck and head arteries with a stethoscope and wasn’t able to detect sound so whatever it is, it’s subjective. I’m hoping a head scan will show up what is going on. I can clearly hear my heart clanging in my ear and the thrumming whirring noise that accompanies it goes in sync with the heart. Very disconcerting. Of course, it could be a nerve that became overly sensitive or could be vascular but perhaps I’ll never know for sure. I’m hoping some imaging shows something. My doctor did a full blood panel and checked my thyroid and electrolyte levels and blood pressure and so on. Everything looks good. My instinct is that it’s something structural or an auditory nerve that became oversensitised. The vibration feels like a pressure in my head. Not so much a muscular twitch. It’s not all the time but seems to correspond with fatigue and a higher heart rate.
To listen for a muscle spasm, I think the doctor would need to put the stethoscope over the ear, almost in the ear canal. It seems typical with T that all measurements come up as normal - very frustrating, as knowing the root cause would offer some emotional relief and hope. You said somewhere that the tension in your ears is relieved by lying down, which is what I found too. When you lie down, do you get a tickling or wet feeling in the ear canal as the tension eases?
Soon after mine started, I also started with heart problems, although I had been diagnosed with Atrial Fibrillation many years before. The doctors thought that my beta blocker was slowing down my heart too much and so they lowered the dose. However, it is possible that my heart and ear problems were and still are inter-related. I suspect it is all down to blood flow and/or the nervous system.
Hello. Don’t worry you’re not alone. And as someone said earlier on this post, with pulsating tinnitus you have an excellent chance for a much better outcome of your symptoms. If you put he tip of your index finger in your ear and open your mouth, you will realise how close is your jaw is to your ear and how they are so closely connected. There are many treatments in the pipeline for tinnitus. The most promising one is Linire being developed in Ireland. There is also an amazing Dr who I follow on you tube. He has tinnitus and the information he provides is amazing. His name is Ben Thompson. Don’t worry the cause of your tinnitus is probably mechanical and there is hope for you.
Thank you for a very encouraging reply. I am actually Irish and I am very interested to hear that there is good progress being made in my country of origin. I’m going to keep an eye on that. Thank you too for the tip on the other doctor. I know there are so many charlatans out there so I’m very happy when I hear of Atlantic people doing real research and support work in the community.
I believe Lenire is available through certain private clinics now, at least in the UK and Ireland. I'm not sure how applicable it is to puslatile T though, if that's what you have.
I know after I get my ENT appointment and a definitive diagnosis of either regular t our pulsatile tinnitus. My instinct is that it’s pulsatile because its rhythm synchronises with my heart rate. I check on my Fitbit watch and always links up.
hi it’s difficult the first stage that you are in but I promise it does improve
If you are near London & can afford a little private help I can recommend you see Dr Laurence Mc Kenna. Keep your ENT appointment too but he will help get your body’s emotional reaction to the problem in check. Like other have said also look to the BTA for help - they have an online course called “take on tinnitus” The BTA also do a CBT for tinnitus with Debbie Featherstone which could be useful. The BTA online support groups are also great.
Once your mind is trained to no longer see the sound as a threat or upsetting then it stops paying attention to the sound & you don’t notice it. That may be hard to believe now but you will get there with a little help.
This process of habituation to tinnitus can happen naturally over time but in my experience professional assistance helped speed the process up a great deal.
Thank you for these resources. I love that they are online as I’m based in Canada. I will definitely look into them. Thank you too for the encouragement and reassurance that it is very possible to habituate. This is what I need to hear; positivity to give me courage and hope.🙏🏻
hello. Your on a journey that at present is giving despair to you. I’ve been through it and was terrified. It’s the not knowing. Keep calm and try to keep occupied… it’s only a noise that spikes during low esteem and loneliness. I now live with my T and it doesn’t effect me half as much as I’m no longer feared of it but for me it’s been a very long journey . Be brave and know 1 in 10 suffer with T ….Good luck
thank you. This is great advice and very positive. Just what I need to hear. Basically, it’s an opportunity or a wake-up call to seize our joy and really try to understand what brings us a sense of purpose and well-being in life. I was particularly struck by your observation that it is associated with low morale and loneliness. You couldn’t have said it better. That is exactly when mine is the worst (All of my perception of it is worse and I struggle). I have linked the sound to loneliness during lockdown so I think I have a trauma association with it. Sound = loneliness = isolation = not okay. I need to break that link. For it to simply become just a sound without a story attached to it. Thank you for pointing this out. Very helpful.
Hi, I know what you are going through, my tinnitus started nearly 3 years ago and I thought no way can I carry on living with this constant ringing in my head, but slowly I started to learn on our to live with it and now I live a more or less a normal life. I still have times when my tinnitus seems to be very loud that`s when I use masking sounds on my hearing aids. I only have moderate hearing loss but I was given NHS hearing aids to help me with my tinnitus. My advice is to try and keep busy and spend time outside if the weather permits also try to find if there is a local tinnitus support group near you, I go to one every six weeks in Brighouse, West Yorkshire and find it very helpful to meet and talk to other people with tinnitus on how they cope.
Thank you. I’m learning that it’s very important to keep on living your life and not let the T take over. Even if I sometimes feel distracted when I’m with people and trying T hide my distress, I need to fake it till I make it. Easier said than done but I hope with time it will become more natural.
thanks. Is yours gone or quieter? I actually have low BP. I use a CPAP for apnea and take passionflower and magnesium. Passionflower is great for sleep and distressing. 😊
Thanks. I’m not sure if you’ve heard of it but Magnolia Bark is also terrific for calming the nerves and promoting sleep. Has a similar effect to passionflower.
Hi! I didn't know till just know. According to what i just found on the web, has a similar effect on GAba than passinflower, and this is the important thing. Thank you for sharing this with me!
However bad it is, we all know what you go trough, you will go trough some phases of struggling and accepting, but just know 100% sure you will come to a point where this isn't an issue any more. I have tinnitus for more then 30 years, and due to several incidents in got worse and worse, but by simply accepting it and focusing on other things (life, in general) the noise has got no influence on my life, in any point, even greater: I don't hear it anymore... I enjoy music, I go to concerts (using ear protection), ... amazing, since at one point I completely didn't go out anymore and even wore ear protection almost all the time... from gotten completely nuts to completely normal, ... so, don't worry, check TRT and in a very short time you ll be ok.
and most important: avoid doctors and treatments, don't search for 'solutions', they only cost money and put you in tinnitus focus, don't go to 'self-help-groups', get off the internet, don't look for 'tinnitus solution'... simply accept, breath, maybey look up some tips on Tinnitus Retraining Therapy (Jastroboff), thats the way to go.
Thank you. This is all so encouraging and what you’re saying to me really resonates. My instinct is that the more I feed this thing, the more hold it has over me. It’s so good to hear that you live your life and don’t give it power. That’s proof that it’s possible to not have it take centre stage in our lives. I concur too about doctors in general. There are some excellent ones but in my experience, they have been quite dismissive and unhelpful. Some have even made me more anxious.
I have read up about Jastroboff and it makes good sense to me.
Hi Benelle I'm sorry you are struggling so much with your T at the moment. I have had T for about 3/4 years now it sounds like I'm on an aeroplane a constant background engine noise. I also get a blocked feeling in my ears and have exzcema in my ears so they are itchy and sore. Most of the time I don't notice the noise I like to be outdoors a lot in nature walking my dog and in my garden. So I think I have habituated to it occasionally it irritates me but I say to it "ok you are getting on my nerves but I'm going to get on with my day so go away" obviously it doesn't go away but telling it to go away and doing something I like to occupy myself seems to diminish it so it doesn't have power over me anymore. I also do a body scan or a meditation every morning for approximately 20/30 minutes. My go to guy is John Kabbat Zinn he has a gentle voice and talks quite a lot so some people might not think its meditative. However for me its a very relaxing experience just following his voice and very often my T seems to disappear whilst I am listening to him. He is on you tube. We are all different and there are lots of ways to learn to cope with our problems. So you just have to find your way to cope and it may take a while but I'm sure you will find your way to habituate. All the very best and take care.
Thank you for your lovely, thoughtful, and encouraging message. I’m really touched by all this feedback from kind strangers. What a wonderful aspect of technology. I think your approach is something that would work For me. I developed chronic pain seven years ago and learn how to live with and cope with that through meditation and mindfulness. My instinct is that this will be a similar process. I am very familiar with John Kabbat Zinn. I am also doing a free 40 day online mindfulness meditation course now with Tara Brach and Jack Kornfield. It’s all about radical acceptance and learning to be with what is rather than fighting it and causing yourself distress. I know Kabbat Zinn has excellent resources for dealing with chronic pain and such. Apparently tinnitus and chronic pain perception are closely related in the structure of the brain. I also practice coherent breathing and box breathing and had been making time in the morning to meditate. Unfortunately, the time when I need it most is when I’m very distressed and then I forget to do it. Thank you for the reminder. Thank you for the encouragement that it is possible to live with it. Mine also sounds like a motor engine. That combined with a clang of a heartbeat.
Oddly perhaps, I also experience ear and head pressure occasionally as well as ear eczema. I put a dab od olive oil in my ear opening and castor oil around my ears and it’s very helpful To soothe the ears and heal eczema.
I’ve suffered for years with truly awful tinnitus and tried everything. I’ve had all the sounds ringing in my ears to a crescendo symphony. I had a hearing test last week to reveal I now have middle ear dysfunction to sort out. The reason I’m posting is that the audiologist recommended this app- Widex Zen, Tinnitus Management. She said to play the Zen sounds ( good for me but might be wise to chat to your audiologist to see what suits you more). I have the hearing of a 6 year old as I’m so hyper alert in the very ear that I suffer with tinnitus the worst- strange isn’t it!!). Anyhow, she said play it for 2-4 hours a day to try and make the brain hear these sounds and try to ignore them. Tinnitus is a consequence of damage to the hearing system, which creates random electrical patterns that are perceived by the brain as real sounds. The app is very good and free- worth a try! Good luck
thank you for the recommendation. I actually have the app as well as Beltone calmer which is also very good. I also make use of ambient sounds on Spotify. My hearing was checked and is near perfect so my underlying cause is something else.
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