Hello, I've been suffering from tinnitus for over a week, after going to a loud bar for 1 hr (which I wanted to leave but my friend wanted to stay), and then a restaurant and cinema the next day which seems to have caused both my ears to ring at a high pitch (14000Hz). I can only think this is because for the past 8 months with lockdown I haven't been anywhere 'noisy', and these places were. I've had tinnitus occasionally in the past, but just for a few hours after being on a plane or leaving a loud place and it's always subsided.
The noise is high pitched ringing in both ears and has got progressively worse over the week. I have music on when I am my own but can hear the pitch over the top of the music. I have tried soundscapes and they don't offer relief. I have also been trying meditation and conscious breathing as I know my body has gone into a flight or fight state but my brain doesn't register that the sound is benign and that I am not in danger. I have downloaded the oto app as well as MyNoise to try and have been reading Glenn Schweitzer's entries on the Healthy Hearing blog.
I have hardly been able to sleep all week, feel very suicidal, and am struggling to see a future - I can only think of all the things I will be losing and I cannot cope. I feel like I am in a nightmare I cannot wake up from. I also have GAD/anxiety which I know isn't helping as I constantly feel surges of adrenalin and fear which exacerbates the tinnitus. I know to take my own life is extreme, but I can't see how I can go on like this. I have spoken to my twin and she has said I need to get through this and I cannot leave her. I don't want to leave her and I want to live, I just can't see how currently but am hoping others were in this position when newly diagnosed and have been able to live and enjoy life still.
I wanted to ask:
- When you were first diagnosed, how did you cope? What resources did you find helpful?
- I am going to get an ENT referral, should I also see an audiologist?
- What is your experience of habituation? What is the best programme to try? How long does it take?
- What are the best apps you have used to help manage tinnitus?
- Can you manage to live and enjoy life with tinnitus? I know this is a loaded question but I am struggling right now so much to see a world where I can.
Thank you so much.
Em x
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emmakt_
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Hello Em,My name is Penny and I’ve been struggling too for a year. Many people on here seem to have tinnitus and some struggle more than others. I’m hoping that yours should improve since it occurred after that loud concert or whatever. Firstly try and calm down . Go for long walks , the fresh air helps me and the sounds of birds and children playing and my dog’s playing . You’ve got to find a way to carry on . Hopefully yours will improve, mine has been awful today . I can sympathise with you . I get my days when I wonder how I can cope but you know you can cope , yes habituation does come gradually , the brain must say “ oh well let’s just get on with it”. There are some books out there to read on the subject. Yes go to Audiology and also. Ent clinic .
Good luck to you . Your family need you . Just remember that .
Hi Penny, thank you very much for your reply. When yours is awful like today, how do you cope, what techniques do you use? It's just so incessant the ringing, and I can't focus on anything else. I miss my old life so much and I know comparing back is probably not helping and adding to the anxiety and stress.
When you say habituation comes on gradually, does that mean you have that now, and have good and bad days, but just get through it as best you can?
Hi Em again , Sorry I didn’t reply back straight away. I see that you’ve had so many more posts full of interesting and helpful facts. The main thing I found so helpful with this forum is the great company of others on here and the realisation that I am not alone, so now you know your not alone too .
One thing I would like to add is be aware of the American guys in the long adverts that claim to have a cure, there is no actual cure and you could end up wasting a fortune on these money grabbing time waster people .
I wish you well and I will keep my fingers crossed for you that your ears might just calm down from the shock of that very loud music and hopefully you might revert back to normal.
Firstly I'm so sorry that you feel the way you do . Secondly you've come to the right place. Thirdly I'll try and answer your questions.
1. I was diagnosed with intrusive tinnitus last July . I didn't cope well at all for the first six months. I couldn't sleep and had very negative thoughts - like you. The BTA website and forum are the most helpful resource out there.
2. An ENT referral may take time. If you go to ENT I believe you'll be referred onto audiology. Other people will confirm this.
3. I'm in the process of habituating .. It's a very gradual process. I haven't tried any programs . I just come on the forum, read books and watch YT videos.
4. I haven't found apps very helpful.
5. Life is different with T. I'm learning to live with it and enjoy things again. I think you will too - even though it's hard to believe now.
Hi Em. I 'm happy to answer any questions you have. If you can find a pharmacy open this evening .. Go and buy Phenegan. It's an antihistamine but it will help you sleep. I took it 2-3 times a week for three months and 1-2 times a week for a further three months. It's as if it helped me learn how to sleep again. I only use it occasionally now. Habituation is getting used to the noise and - as a result - paying less attention to it. The tinnitus may not change but your reaction to it will. You won't always feel the way you do now. Believe it or not! The best book I've read is Living with Tinnitus & Hyperacusis. The best videos are Julian Cowan Hill. All the very best.
Dear Emmakt_ wish i could give you a hug and tell you IT WILL GET BETTER! Ive hade T for 17 years, got it during a period of time when i lived in a backpackers hostel with a loud bar, worked in another bar and listened to headphones when i went to bed. Before this one of my biggest fears in life was getting tinnitus, so how i could consider living like that a good option i do not know?! I wont say i suffered for all of these years, i lived, loved, given birth to two wonderful kids, got a uni degree, been to bars, gyms, cinemas... yes having to wear earplugs everytime i visit friends with kids and everytime i go to a party or a loud restaurant but I am so used to it now. Im very cautious about noise and find myself scanning the environment Im in to assess potential loud noises that could happen. I do this without thinking.
When I got my T it was pretty much "you have to find a way to handle this because there is no cure". Since then i find a lot of research has been done, and there is a lot more knowledge regarding different kinds of tinnitus and that some are actually curable. Not the one i obtained though, actual eardamage is hard to cure. But last year i found myself with stress induced tinnitus on top of my old one and this kind can actually reduce in time.
The reason i started visiting forums this time around is because i got yet another kind of tinnitus on top of my old ones, started by a common cold . This time its really bothering me, being so loud and with a pain in my right ear, have felt so stressed and down in the last week. So i know what you are going through, facing maybe having to go through yet another habitution process.... but this morning i woke up and it was a lot better than yesterday. One of the reasons it felt a lot better was that i got a good nights sleep. But also since it came from a virus infection i think it hopefully will reduce as the swelling in my ear goes down.
The way i coped that first period (May 2004) was to early on decide that this bloody tinnitus is going to be my friend. Its increased in volume a few times since then and everytime its a minor process of habituating yet again. And after a while it feels like it used to.
My tinnitus goes super bad if Im anxious or stressed or if i sleep to little. In this first panicking stage of yours, try to get help sleeping. It does wonders. And, if you're already on medication for anxiety/GAD use them as much as you need to. If you have a good way of winding down, max your gad-meds just before a session of mindfulness or whatever you find a good choice of relaxing. This might help your overall stress levels. Since being tense in shoulders and neck tends to increase tinnitus its good to exercise your shoulders, upper back and front to. Easy rubber band exercises can do wonders, just to get the circulation going.
Take long walks with people that you love and talk about things, maybe things that you like rather than about your tinnitus, but do also ventilate all your fears. I think you will find when you start adapting a little bit, that most things you do in life dont get affected by this. But if it bothers your sleep, get serious help with this.
I really wish you all the best in this, so sad for you and how you're feeling.
Hi Karin, wow thank you so much for your reply, that's so good and encouraging to read that you have managed to live such a full life, and gives me some hope at a time when everything feels so dark and awful. I'm so sorry to hear that you have had another type of tinnitus on top of your existing one, I can't even imagine how you could deal with that, you are very strong.
Can I ask how you went through habituation before and how long it took? What does it feel like when it works, is it knowing that it is there but not noticing it?
I don't really remember how I did it, it was a lot of trial and error. I tried to mask my initial left ear tinnitus by listening to loud music, which then gave me right ear tinnitus. I didnt have internet access more than one hour a week during this time, so the amount of research i could get my hands on was limited. I simply decided that I have to manage this without going crazy, and then I slowly adapted to my new life. I felt depressed for 2-3 weeks I think, before it turned. Mind you I did drink a lot of alcohol that summer, so I was pretty numb most of the time. I have a lot of memories from that summer and somehow the tinnitus bit plays a very small part in them so I must have habituated quite quick. But in the beginning it was quite mild, easily masked. The reason why I was so sad was because it was such a great fear of mine for a long time prior to it happening.
Since my new, much louder tinnitus, came last tuesday I've hade trouble sleeping, which makes everything so much worse the next day. I have meds for GAD at home that I got just in case, Ive found them useful for helping me sleep. And during a day when I got hardly no sleep the night before I use a guided muscle relax-programme that I know works well for me together with medication just to force myself to calm down. Its hard, but I find everything that helps reduce the panic in this stage is worth it. Since I have to small kids I cant just close the door and tend to myself, but I try and get away to rest as much as I can. I dont find that soundscapes work that well for me, I rather read something or listen to a pod to keep my mind off the noise.
I think its important to find something that works well for you. It will get better, but the panic is real. And also, its a process of sorrow for the loss of ever hearing silence again.
Wish I could give more tips, but my therapist said "just adapt and accept this" after I finally went to get help last year when my new tinnitus was stress induced.
Thank you so much. That's exactly how I feel - I'm grieving and feel sorrow for never being able to hear silence again, and that was always so important to me, I used to have that as part of my gratitude every morning. And now just because of an hour in a bar after 8 months of lockdown my hearing is like this :/ But I know everyone with T must have similar anger and frustration, and be so upset that this has happened to them.
And you are right - I need to adapt and accept - I think I am so much in denial that this could have happened that then the stress becomes worse and exacerbates the T.
I am in awe of how you have built your life and I really hope your recurrence gets better soon.
Thanks, Im glad that you found my experiences helpful, but I wish none of us had to talk abput this. One thing i can say that happened this morning is that every little win means a lot.
The tinnitus I got last year in june was pulsating, head swooshing, all around the head in the beginning. In time it reduced, on good days not particularily hard to deal with but sometimes quite debilitating. Come this tuesday and I woke up with an alarm in my right ear, after a cold whick clogged up my right ear for six days. This has never happened to me before. This week has been about coping and trying to find success stories of people with infection induced tinnitus. (Have not found many, most tend to stop writing about it after a few weeks). I figured yesterday that I could try an anti inflammatory course of paracetamole and ibuprophene to reduce the swelling of my eustacian tube (which i figured was my problem). This morning I woke up and couldnt hear this new sound at all! All i heard was my familiar, prevously completely awful, tinnitus but now it was like the sound of angels.
is that not a good example of habituation? It did return mildly during the day but not at all like it was yesterday so hopefully the swelling is going down. I found it quite amusing that I really felt so happy about my old tinnitus, never in a million years did i think that could happen!
Hi Emma! I got my tinnitus 3 ago as well after being exposed to a loud noise for few hours in a club.I got very scared and panicked about this new noise in my head.I read as much as I could I went to doctors but to no avail.After a while I stopped looking for answers or a solution and to be honest only when I read some article about it I become aware again about its presence.When I couldn't t fall asleep I tried to think that this sound is actually making me sleepy that is like a sleeping pill so I stopped worrying too much before going to sleep. Thats the only solution there is for me habituation,looking at it as a friend, attributing it posible positive functions like helping to sleep,to focus..It will be in the background like any other sound in nature surrounding us which become present in our mind only when we think of it. Losing some of high frequency over 8000 Hz receptors in our internal ear which are first exposed to the loud noises, being located closer to the internal ear opening could be irreversible and maybe the cause of tinnitus, the brain continually recreating those missing frequencies with this tinnitus sound. The more you think about it looking for answers the stronger becomes and the brain will acknowledge its presence as a potential threat factor.
So sorry to hear that you are struggling with your tinnitus. I have suffered with tinnitus for many years but it didn't bother me one bit until December when a bout of Labyrinthitis left me deaf in my right ear. This followed a week later by my suddenly hearing music which no-one else could hear!! I now have what is called Musical Ear Syndrome, or Musical Hallucinations so I hear non-descript music 24/7. The reason I am telling you this is that I have since been through every emotion imaginable - and yes, there where times I prayed that I wouldn't wake up. My husband and family were distraught as they didn't know what they could do to help me and I realised this was something I had to deal with and I resolved to get on top of it. I would suggest you ask to see a specialist and also get a hearing test. My GP has never heard of my problem, and in fact I don't really think a lot of GP's totally understand tinnitus.
I was in a dreadful state but, like you started to read as much as I could and I am gradually coming to terms with it - I truly believe "acceptance" is the keyword. I get good days when I think this is it I am going to get better but this is usually followed by a bad day. If you listen to music then do not put the volume up louder than the tinnitus as the tinnitus will just get louder. I find when I have a really bad time that a quiet room, helps me.
My GP did prescribe Diazepam 2mg - I cut one in half when I am having a bad day and this does help (may just be a "placebo" effect) but it does help me. My biggest regret is that the hearing loss in my right ear has robbed me of the ability to hear higher pitched sounds so I cannot listen to music any more as nothing sounds right. The only thing I do listen to is relaxing Zen music and as I didn't know what that sounded like before I find it helps put me to sleep!!
I am six months into this and although I hate what is happening to me (I too used to enjoy comparative silence) I will not let it beat me and that is what you must tell yourself. I find my nice hot relaxing bath and hair wash each morning sets me up for the day.
Whilst typing this I have rolling drums and marching music pounding in my head so time for my bath.
You are still within the first week. So anxiety will be high and it will definitely be a struggle. Your anxiety will actually make it louder sadly. But understand that over the course of the next two to three months it should calm down to the point you only hear it and quiet rooms if not go away. Until then I would work on your health to support the bodies natural healing processes. Take iron, zinc and magnesium and vitamin B12 and try to cut out sugar and caffeine if possible. On top of that try to keep your anxiety lower. I take natural relaxation herbs like ashwagandha and Rodiola Rhosea when I need them.
Things should get better so just keep telling yourself that because at this point getting your anxiety down should be your main focus.
Hello EM.T leaves you with stress, and your body needs only one thing. Calm, it feeds on stress and does you no favours.
I have been suffering T for close to 20 years, and coping with it does get easier. You get wise to it. But let's not go down that road just yet. Let's deal with today, 20 years may be irrelevant to you.
The one thing I would say to you is panic is the worst of it all. T needs you to be calm and cope, think of it feeding on fear. There are a lot of people on here who can sympathise. Great suggestions on here, and for me, you can always DM me, I am recently retired so often sit with the laptop. To DM click on my name, and the option comes up.
The posters replying to your original cry for help have said everything - more than - I would have said. Just a further thought on habituation. When I first bought myself a flat all I could afford was one on a main road out of London. The traffic was incessant even at night and I thought I would not be able to cope with the noise.
BUT within a few months I just got used to it, and only noticed the traffic when there was a stream of motorbikes going past on a Sunday afternoon!
So that’s what habituation is - it’s just your brain getting used to the noise. It just happens x you don’t do anything!
I don’t come on here much anymore because my tinnitus honestly doesn’t bother me enough to even think about it anymore. I’m a 25 and I’ve had tinnitus since I was 19. I was the very same as you when I first got it. I’d say if you look back on my previous posts, I was in despair 😂 please know that it will get better! You are in the very early days so this could even go away remember and if it doesn’t you WILL habituate to it. Once you lose the feelings of anxiety and fear towards the tinnitus things start to get better. I honestly never really hear it unless I’m in a quiet room and even then I don’t hear it cause my brain just filters it out. Trust me when I say I thought my life was over I felt so different to all my friends around me but now it’s something I rarely think about 😊 hope this helps x
Hey it did take awhile being honest. I would get used to it and then I would get spikes and id be bad again. It’s the anxiety towards it that makes it worse if you ask me! Once you can control that! Time is the best healer and it just happened over time. I don’t remember doing anything specific or anything, it just happened 😊
Hi I have had T for over 4 years and I struggled at the start like you. It seems like a devastating life changer that will destroy your quality of life BUT you learn to adapt and accept.
Whenever I have to deal with spammers and people trying to flog dubious products to people trying to manage their tinnitus, it's threads like this one and the lovely people in it who remind me why a space like this is so important. You are all rock stars.
Stay positive Emma - as a fellow traveller in anxiety and related problems, I can empathize with the emotions and uncertainty you might be feeling right now. There's so much good advice, reassurance and support from the community for you which has been shared already here, and on our main website if you need it (I particularly recommend the webinar from our president, Tony Kay - youtu.be/DX05bVAcoVg).
I see so many of my problems are identical to what you have. This is the first time I have been on this forum, simply because I have "lost it" recently like you say that you have. I have tried many medicines and private treatment, all of which have not been successful in any way. Sorry for that! I remember the early stages of the "thing" and couldn't quite fathom it out, but as time goes by I learned to endure it - not live with it - endure and I have to be completely honest with you and say that if it doesn't clear soon, I believe that you will be with the "torture" daily for.... I sincerely hope that I am wrong but I don't want you to be fooled like I was in the early years of T.
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