I posted when I first started with Tinnitus 6 months ago so thought I would write an update. Since then I have been to ENT, had an MRI and got hearing aids. I'm still awaiting CBT.
My MRI was clear. The hearing aids seem to have made the Tinnitus worse and when in do not cover it up anyway. I have some 15mg Mirtazapine which I too scared to take.
My T was a kind of theremin sound in my right ear and a buzz in the left. After I used the hearing aids it flattened out into a loud hiss in both ears which has just got louder and louder.
I've tried just ignoring the T, I've tried masking mainly with crickets which are the only thing which covers it up at all. But it continues to get worse.
I'm now scared to try anything and at a loss as to why it is getting louder and if anything I am doing us making it worse.
Does anyone have any thoughts or advice on this?
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Thinkzs
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My T has got louder over time - my T is a rare type that reacts to certain sounds . It was buzzing last year and now it is a solid intense tone . I have to wear ear plugs and ear defenders in certain situations . I tried hearing aids which made it worse so i stopped very soon after trying and I cant really do sound therapy as well. I have hyperacusis as well
My situation is very difficult as the T has disabled my life in many ways
To be honest that is why I ask as I'm not sure. I can't say I've noticed anything in particular making it louder be we are exposed to so many sounds and inputs all day I don't know why or what is making it louder in general. I can't say it has ever returned to a 'base' level. It gets louder or changes pitch and stays like that until the next change or worsening.
I have tried clicking my fingers near my ears and it shoots up to a high pitch almost instantaneously for a second or so.
do u have any idea what could have caused yr T -I could have possibly had an underlying brain condition that i was unaware of but docs didnt find anything within their knowledge. I had a head bump ( at top back of head) with some mild concussion and then the day after we connected new speakers which triggered the T ( coz of the wide range of frequencies in music and the high quality of the speakers) I avoid music and watch TV with subtitles.
My T was buzzing last yr then a particular noise incident in the new year made it change to a solid tone ( about the same volume) then 4 weeks ago another particular noise incident made it change again , and now its more intense and more distressing. So certain artificial sounds can change my T and general sounds can make it rise through the day - so not all sound can make it 'change' just particular artificial ones.
Do u have any idea what caused yr T ? Yr T could improve eventually as 6 months is still early days really - but be careful with certain sounds like music
I have a mild to moderate hearing loss in both ears.
I generally listen to Radio with crickets in the background as low as possible to cover it up but also worry this constant stream of noise could be making it worse.
I was watching TV OK for a while but the T is too loud and distracting at present for me to concentrate on it.
i would be careful with sound therapy and maybe reduce this at moment to see if u have any improvement . What does yr T sound like ? is it high pitch /hissing /multi tone / or combination
I do agree that Treble Health and Dr Ben Thompson's YouTube channel are good references for people to look at for a positive view of the condition and for managing life with it.
In his website article on reactive tinnitus, Dr Thompson makes a couple of points which apply to tinnitus generally and hyperacusis specifically:
"First, because reactive tinnitus is just that – a reaction to noise – there are therapies that can offer relief. Remember, the brain is an adaptive organ, so it has the capacity to “retrain” how to respond to any number of triggers."
and secondly "The condition can be both actually and metaphorically in your head. For most people with reactive tinnitus, the perception that their tinnitus is worsening because of more acute episodes can cause a flood of negative emotions and discomfort, thus compelling them to try to avoid sounds altogether.
This strategy of avoidance, including the use of earplugs, usually intensifies the condition by reducing tolerance of everyday noises. Other sufferers may develop a kind of persistent anxiety for fear that routine, ambient sounds could trigger a reaction."
That's my problem, is it reactive? Is it a spike? Am I just getting up to full blast as I've not had it that long or is something I am doing exacerbating it?
The only person who can ultimately answer those questions is you - you know what your lifestyle is, what your exposure to noise levels is, how you think and feel about your tinnitus.
A lot of what we're discussing here is about context. If you're going to F1 racing and are going to be around incredibly loud cars all day, it makes a lot of sense to use ear plugs or ear defenders to protect yourself against noise-related damage and the possibility of hearing loss occurring. It makes less sense, arguably, to wear the same ear protection to go to the shop or walk down your street.
One of these environments should be quieter than the other - if our belief is that this isn't the case, that both are as bad as each other, my opinion would be that this demonstrates a shift in our ability to tolerate a normal level of environmental sound. Other folks may disagree on that point.
What I hope you come away from if you read the linked piece on Treble Health or watch Ben Thompson's video is that reactive tinnitus and sound sensitivity are not fixed. They can improve. There are treatments available and those treatments can help people to feel able to cope with sound in the world and not view it as a threat.
an extra comment. Im not sure what you were expecting hearing aids to do other than make your hearing clearer. What they do for me is to make the real world more clear and thus the fantasy world in my head - the tinnitus- is less prominent
When you are “masking” you should still be able to hear the T on top, not to cover it completely. If you cover it completely it comes back with a vengeance once the mask has gone.
Pat has made some very valid suggestions to you on top of what other posters said to you a few months ago. You might want to go back and read them, too?
I did read them at the time and have tried to implement them.
I try sound therapy at a low volume, cut out caffeine, alcohol etc to no real effect. I was given hearing aids but with no support. They don't mask the T when in which was I thought was suppose to happen from talking to people who also have them.
Thanks for the reply as usual. I do have another appointment at ENT in June, I think this is for CBT. I'm just trying to work out why it is getting worse rather than staying the same.
i got hearing aids 2 months ago with a tinnitus masker inbuilt. Not helping . The audiologist said its because my T is louder than the program. Dont think its helping with my hearing either. I have another few weeks on the 9 week trial . At least I can return them, and get my £2000 back.
are u avoiding drinks with caffeine , reducing alcohol . Are u taking medications? You will have to have a think about the things which could effect it .
Hi Thinkzs It's still early days for you at 6 months - and it sounds as if you're doing all the right things. Don't be discouraged. T can fluctuate before it settles. Give yourself another 6 months. I'm sorry you didn't get any support with your HAs. There should at least be a follow up. Perhaps you could ask at your next ENT appt. CBT will hopefully help you manage the situation too.
Hiya I have had tinnitus for 14 years. It has gone up and down over the years. This year I got a new duller tone in my right ear and it set me right back. It is also reacting to certain sounds (which really shook me). That was the result of a bad cold with fluid in my ear. It has taken me 5 almost 6 months to get my head around this new tone. I am feeling a bit more like me. So basically, dont lose hope. These new sounds, even ur usual tinnitus sound can go down. It can take awhile (as I found out this year). In the past my spikes lasted 3-6weeks. Never would i imagine almost 6 mths.As for the mirtazapine 15mg i take it too. I was nervous just like you. It helps ur mood and helps ur sleep. They even say in some ppl it helps lower the sound a little.
Hi Thinkzs, It took me over 2 years to learn to live with T, I was in some dark places and thought it would never get better, but slowly things did improve. I still get spikes, just getting over one which lasted nearly 2 weeks, I just tell myself things will improve and try to keep busy and spend as much time outside now with the weather improving. I know how hard it is living with T but just try and stay positive and not to think about your T. Best Wishes
Hi, Some good advice here and I can only add that I had Hyperacusis and Tinnitus which I have now recovered from.My tinnitus was as mentioned, a reactive tinnitus which I believe was inherently linked to the hyperacusis. A large range of sounds would instantly spike my tinnitus and almost all sounds were exceptionally loud.
I would say it took around 6 months for me to be on a path of recovery but everyones situation is different. After the anxiety was under control I used a private CBT specialist and wore a hearing aid, not to help with hearing loss, but to give me very low level sound therapy. Dr Ben describes this process very well. it was never meant to mask the T as this is not the path to habituation but hyperacusis can be treated by desensitising your audio system over time with sound. This also helps habituate to the T allowing it to be in the background of your hearing focus, there, but not noticeable (i can hear it now as im thinking about it whilst typing)
Have hope, there are some great examples of management and success stories around. try not to have negative calamitous thoughts, easier said than done, but the quicker you remove these, the quicker the progress will come. as said, 6 months is still relatively new for yiur body to adjust, heal and habituate.
Hi there fellow sufferer. We are with you. Your story is similar to mine. Six months in, after exhausting all medical and holistic approaches, my T was as bad as ever. Hearing aids appeared to create a new sound. Loud noises made it worse. I was reading stories of people habituating successfully after 3 months. I was in fight or flight mode. Looking back I now know I was obsessed with the noise and looking for it everywhere. I have high frequency noise in right ear, plus a diesel engine in my left, making it hard to find the right sound therapy. I soon realised diet makes little difference, although caffeine was a trigger. Ibuprofen also made it worse, plus I couldn't sleep. Please keep plugging away. I use a Bluetooth sleep band all night. Have you tried the high frequency neuromodulation sounds on YouTube. Thay saved my life. Make sure your day is packed solid. Morning is the most important. Plenty of noise and distraction. I struggled with this as I loved peace and quiet. 12 months in I can say I am much better. Sometimes there's a peak but I don't get too stressed about it anymore. I can now wear my hearing aids. Make sure yours are programmed to the frequency you are missing. I had to take mine back twice for fine tuning. If you can't sleep ask your doc for a sleeping aid. I did. It was enough to break the cycle. I also take a Gaba supplement which reduces the anxiety. Hang in there. I'm confident you'll be back on here telling us your success story!
Hi there. I couldn't seem to source gaba in the UK so I'm buying it of Piping Rock Supplements in the US. They're very quick and postage is reasonable. Its quick release so I don't take it every day. Just the days when anxiety levels are up.
I have only recently developed T in the last 4 weeks in my right ear and am still struggling to come to terms with managing it on a daily basis. It has deeply affected my mental health and sent my anxiety through the roof. I initially thought I had an ear infection and went to my GP. I was informed both my ears were blocked and needed wax removed. After the ear wax removal, the constant piercing ringing continued. I went for a hearing test and was told my right ear was clear and healthy so the audiologist said it was T and that it was permanent and lifelong. 😪 The upsetting thing was that my left ear still had wax in so the hearing test couldn't be done so I am waiting for ear suctioning to be carried out so that I can have the hearing test done.
I am beginning to understand that while there is advice given about masking and managing T what works for one person won't work for someone else, it is trial and error. I am concerned about whether I will be able to manage this or not as so debilitating. I am trying so hard to stay hopeful and also work on a toolkit to help cope with it. Deep breathing and alternate nostril breathing help sometimes as staying centered and calm is key but not always possible to maintain especially when you experience a spike that can last from minutes to hours. Distraction and training your brain to not give T attention takes time to perfect. I listen to ocean calming sound
I can understand why you are reluctant to take medication but it may help. I take Diazepam but only if my anxiety is so high that I am finding it to calm down. The T quietens down to a sort of tingling which gives me some relief. I also journal which helps me keep track and monitor what has worked and times when the T is at its worse. My feelings and mood do dictate how I am going to manage this so I am working on getting focused on that.
It is very early days for me but I do hope what little I have to offer in terms of tips and advice helps you and I do hope there is improvement.
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