I have had T for 7 months. It isn’t hearing related. However, as I have been on this journey, I have noticed that I have the T constant 24/7 that often changes with random spikes. However, I am also experiencing somatic T that I wasn’t fully aware of before. I was diagnosed with TMD and have been given exercises to do. (Wasn’t told how long to do these for). However, it is also suspected that I have trigeminal nerve damage as I have some strange sensations in the left hand side of my face. Often when I close my left eye, (or just normal facial expressions), there’s a weird sound like a rolling thunder. (I guess like the sound from a yawn that some people experience). On top of that, suddenly I have noticed that my T gets worse with jaw clenching, eating, etc. certain neck movements also increase the volume. So if I look up and put my head back it’s louder, chin to chest makes it louder, as does pushing the head/jaw out/forwards. However, moving the neck from side to side does not affect it. I have had a neck issue at c5/6 for many years, and it has never caused tinnitus. The tinnitus came after recent ops. All these new discoveries regarding the tinnitus has really set me back. My GP just kept saying “might be nerve damage” yet offered no investigation. When I said my left eye closing triggers a weird sensation in that part of my face she still says “it’s probably tinnitus”. I completely broke down and she admitted the recent ops were probably to blame for everything as I didn’t have tinnitus, TMJ or somatic tinnitus before the ops. I have hit an all time low today. None the wiser after my GP visit and now constantly worried about the somatic T. I just feel it’s all getting worse. I asked about the trigeminal nerve damage and she said that’s what she thinks it is and likely permanent as it’s been 7 months. Apparently where my neck impingement is the nerve root that goes down the arm and body - not towards the auditory system. GP said not everyone with neck issues gets tinnitus. I don’t know. They can’t operate on my cervical discs though as she said it’s only ever done as a last resort. I have been given physio exercises to do as there’s a c6 nerve impingement. I’m finding the exercises make the neck and arm worse. I couldn’t sleep last night. Worried myself as I don’t think I will ever habituate now. Dreading the next tinnitus-related disaster too. As a single parent I’m really panicking. It’s already been 7 months of hell. I apologise for the long post as I had tiny little signs of habituation showing. That’s all gone now. Sorry for such a long post.
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Sassyjax1
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I am sorry to hear that you are experiencing tinnitus distress lately. The first 6 - 9 months are the worst, but you will soon start feeling better again.
My one piece of advice is that you try to stay CALM and RELAXED as much as it is possible now, so you can start sleeping well again soon. Remember that anxiety triggers spikes and sleep disturbances.
Do not worry about your habituation now. You will habituate.
From my experience, habituation can be messy with many ups and downs. From time to time I feel that I might be starting over again, but I got to understand that it is part of the process. Habituation is not an straight line.
When I do not have spikes, I pay little to no attention possible to my T. I still hear it sometimes - I can't change that - but I choose not to react to it and, I just ignore it.
When I am going through an spike, I try my best to ride it out as calmly as possible, as the spike would soon be over and back to my baseline level. Sometimes that baseline level might be louder than before - which sucks - but I keep telling to myself that it is fine... as I always learn - over time - to habituate to any new level.
I know it is easier said than done, but consistent positive thoughts and acceptance are key.
It is the ultimate exercise of self compassion, patience and self care.
Thanks so much for your support. I have T because of complications of recent operations, so there’s an awful lot of anger too. I don’t like hearing it at all. Which is the same for everyone. I also still have a hang up about not having hearing loss but having T. Even scans have shown no auditory issues. Yet here I am. Stuck with it. Your words have been such a comfort. I guess habituation is a long way off, but will look forward to it. Thanks again.
sounds remarkably similar to me. I have stenosis in the c5 c6 region. My tinnitus changes sounds when I open my jaw and do certain neck movements. Also I have nerve damage and if I press on my occipital and trigeminal nerves my tinnitus increases in pitch.
Even with this going on I’ve managed to habilitate and you will too. I know it’s hard work but try and stay positive. You can do this. All the best.
I appreciate your reply Karlos. Thank you. I thought I had begun to habituate until I realised recently that I have the somatic tinnitus too. It’s really bothering me as it’s only been 7 months and I have already had to battle major spine surgery and hyperacusis. I am anxious by nature so I am hyper focused on the weirdness of T anyway and the somatic T is just too much. Thank you for reassuring me that I will eventually habituate. It’s really knocked me for six.
It’s a very hard journey but you’ll get there. It’s your reaction to the tinnitus that you have to get under control to habituate. It seems impossible, especially with the anxiety but try to remember that tinnitus and anxiety can’t hurt you. Try and accept that it’s ok that it’s happening and you’re going to be ok.
It took me about a year to habilitate. I was fighting back against the tinnitus. I was always being negative and hating every moment and giving the tinnitus power. In the end I said to myself that I’m not going to let it beat me. I accepted that it’s there and every time I had intrusive thoughts I repeated that I didn’t bother me and I don’t care about it anymore. Once I did this remarkably the brain adapted and it got better really quickly. I still had bad days but they got less frequent. Before I knew it I could go hours without noticing it. I’m now at a stage where it doesn’t bother me at all. Yes it’s annoying but I can live a normal life and you will to. Just try and get into that positive mindset and you’ll soon get on top of your tinnitus. It doesn’t seem like it at the minute but you will get much better. Good luck and stay strong.
Thank you Karklos! Due to the cervical pain at the moment - (spinal cord is impinged at c5/6) - I am really worried the sound will get louder and there’s nothing they can do for my neck right now. I am too scared to have pain injections as that will cause inflammation (which can increase T). It’s adding to the stress. I’m doing the physio exercises I was been given last week for my neck, but they seem to be causing me discomfort. I constantly fear the T getting worse.
Have you tried a cervical collar? They are supposed to help although I didn’t have any luck. I have pain in my upper spine/ neck area. A stabbing pain when I move in certain positions.
Try not to worry about the sound getting louder. I know it’s hard but that will just feed the tinnitus, making it important, and harder to habituate.
Have they given you any medication for the nerve pain? Im on pregabalin which really help mine. Doesn’t effect my tinnitus either.
I had no luck with the collars. I noticed my neck has been worse since the spine op. I think that’s what’s caused the trigeminal issue too. I have started to lose feeling in my arm and sleeping is difficult because of it. I’m going to continue with the physio for now. They have offered me Gabapentin. I’m on 10 mg of Amitryptiline at the moment - which I find useful for sleep. It’s the lowest dose.
Not sure if it’s been suggested or not but would you want to reach out to an osteopath at all. I don’t have T my son does, but I do have a neck injury and the treatment I receive helps me. Just a thought. I hope you find ways to cope. My son is struggling and is dreading being told his T is permanent. About 3 months in.
Hello. I can’t use an osteopath I’m afraid. I recently had emergency surgery for Cauda Equina Syndrome. I also have a spinal cord impingement in my c5/6 neck too which is also a form of cervical spine CES. I’m sorry to hear about your son’s tinnitus. Hopefully, depending on the cause, it will go. I doubt mine will as it’s 24/7 & came from medical negligence. Usually, T from hearing loss is permanent. My son is only 19, but has a deformed nasal cavity & narrow sinuses. He gets T every time he’s ill or has a cold. Hopeful he doesn’t get it permanently. I wish your son all the best. Thank you for your kind suggestion about the osteopath.
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