Tinnitus is one of those things that is so incredibly individual. Everyone’s experience of tinnitus is very unique. What helps one person may not be useful to the next.

If you are diagnosed with an acoustic neuroma, your tinnitus journey can have many different outcomes. Some folks have tinnitus at diagnosis, and treatment improves or removes the tinnitus. Others don’t have tinnitus at diagnosis but start having tinnitus after treatment. For some, treatment doesn’t change their tinnitus at all – if they had it before, they still have it. Unfortunately, at this time, we don’t know enough about how tinnitus works to successfully predict it.

I had tinnitus before my surgery to remove my acoustic neuroma. I had experienced the ringing in my ears for years, and I didn’t think much of it. I knew everyone had ringing at times, so I assumed it was normal. It wasn’t until I was diagnosed with an acoustic neuroma that I realized the tinnitus was more frequent than usual. My tinnitus was never life interrupting.

After my brain surgery, my tinnitus was gone. I have never gotten it again in my deaf ear. I do, on occasion, have quiet tinnitus in my hearing ear. Things like cold weather can induce it. Also, certain health situations. I was experiencing blood loss and anemia, and the tinnitus got quite loud and frequent, as your cardiovascular system can impact tinnitus. Once I recovered from the anemia, the loud tinnitus disappeared.

I love to share stories on this blog, and I don’t have a lot of in-depth experience with tinnitus, so I asked others who struggle with tinnitus to share their stories. Four different wonderful souls got in touch regarding their tinnitus experience.

How would you describe your tinnitus?

DH– “Constant, high pitched ringing. It never stops.”

DJ-“Moderate to mild most times, but with noise, it can get worse. I’m hesitant to use the word “severe” – but it can get pretty bothersome at times, especially with less sleep, more stress, etc. I can have days where I don’t notice it very much, and others where it seems more of a nuisance.”

LC-“High pitched 24/7 tone in one ear. When I’m very tired or my eyes are tired from screen time, I also have gaze evoked tinnitus. It sounds like a light saber with every eye shift.”

NT-“A high-pitched ringing. As if there were a constant high-pitched fire alarm going off inside my head all the time.”

Did you have your tinnitus before treatment for your acoustic neuroma? After treatment? Both?

DH– “I didn’t experience tinnitus prior to surgery. I had a 16-hour translab surgery on July 13, 2021. Since the day I woke up from that surgery, I have had tinnitus 24 hours a day on the same side as my single sided deafness. It’s very high-pitched. Depending on my surroundings, the volume can vary.”

DJ-“Both before and after, and it is more prominent after surgery. It’s hard to say whether the tinnitus got worse or just more noticeable due to the loss of hearing in that ear. I don’t remember ever experiencing more tinnitus with loud environments, but again, this may have been because the tinnitus was drowned out by whatever noise was there.”

LC-“My 24/7 tinnitus was both before and after treatment. My gaze evoked tinnitus has only been since after surgery.”

NT-“Both before and after treatment.”

What do you wish people understood about tinnitus?

DH-“It can feel crippling at times. Especially in louder environments when I’m surrounded by a lot of people. There’s no cure for tinnitus. But there are ways to cope with it. It’s hard because you can’t tell what someone has gone through or is currently going through by looking at them. You can’t tell by looking at me that I had a 16-hour brain surgery and that I’m deaf on one side. And I feel like people can get annoyed or impatient with me when I “ignore them” or ask them to repeat themselves. S,  it has definitely taught me to be more patient and empathetic with people.”

DJ-“I haven’t had too many in-depth conversations that suggest what isn’t really understood, but I think (at least in my experience) that it can be variable and unpredictably bothersome. As someone who has always enjoyed live music, there is now a definite preference for moderate volume shows (acoustic or outdoor venues). If it is too loud it’s pretty stressful and not enjoyable. That being said, I’ve been in loud conversation environments that I can handle decently well. Again, it just depends, and I sometimes have to pass on or leave events that just don’t work for me. Thankfully, I have a very understanding partner.”

LC-“It really is 24/7, and can be much worse the day after social gatherings, which makes it difficult to decide to go out or not. I absolutely need particular sounds playing in order to sleep comfortably, so don’t ask me to share a hotel room. It is quite difficult to be in very quiet places, and it’s also difficult to be in loud environments – both affect how loud my tinnitus is. Sometimes, my tinnitus is physically painful.”

NT-“That tinnitus can affect your ability to focus, process information, and socialize. It can make it very challenging to process information while your brain is trying to filter out the ringing noise. It can make it hard to socialize because it affects our ability to understand what others are saying and also can make us sensitive to being in noisy environments.”

What are some coping mechanisms or tools that have helped you with your tinnitus?

DH-“My body has gotten better over time with tuning it out. If I stay busy and don’t fixate on it, it doesn’t seem as bad. Staying busy is my best advice. At night, when it’s quiet, I play white noise, such as thunderstorms, so that I don’t just hear tinnitus.”

DJ-“I usually try to avoid too much focus on it – as in if it’s bothering me, I acknowledge and try to shift focus so I don’t dwell on it. I can usually forget about it and enjoy what I’m doing, but I also need to take breaks from loud environments sometimes or just acknowledge when I need to leave. I also think mindfulness, awareness, and acceptance are big. It’s not likely to go anywhere, so I’m just going to manage as best I can and accept it as part of my new reality. I tried some of those noise-managing earplugs (like eargasm) after surgery. I found it wasn’t very useful when combined with the tinnitus.”

LC-“Hypnotherapy, which really reminded me of guided meditation, helped with my gaze evoked tinnitus when it was at its worst. It helped me make the mental connection to my physical tinnitus symptoms. Hypnotherapy taught me that I can continue to practice meditation and speaking to my tinnitus for some relief.”

NT-“Stress management, white noise, or any kind of background noise.”

Has your experience with tinnitus changed over time?

DH-“Yes. At first, it was all I could hear. But as I said, over time, your body learns its new “normal” and tunes it out. It’s still always there, but some days I’ll go hours without hearing it.”

DJ-“It’s only been about a year and a half since surgery, so a relatively short time. I’ve tried hard to bring acceptance to it along the way, and for the most part, it doesn’t feel like a huge issue. Every once in a while I’ll need to leave a situation or avoid an event or gathering. I’ve gotten better at saying no when I think an environment will be more stressful than fun, and friends understand.”

LC-“In the beginning, it was much harder to cope with. While it is constant, there are moments now it is barely noticeable. I have also come to learn what can make it worse and what can make it a little better. My gaze evoked tinnitus was new after surgery, and I had no idea it was tinnitus until I finally found the right answer in support groups.”

NT-“It never really goes away. Sometimes, it is just more manageable than other days. But it is always affecting my ability to think and process information. Sometimes, there is nothing you can do to escape it. Sometimes, it is too loud for white noise to drown it out. A lot of people also have increased sensitivity to sound, known as hyperacusis, which means being around loud noises is uncomfortable.”

When, or in what situations do you struggle the most with your tinnitus?

DH-“Really loud environments. I absolutely love music and going to Christian concerts. But I have to be more careful now, as I get overstimulated and overwhelmed in big crowds. I have special earplugs that I wear that make it more bearable. My tinnitus can also be overwhelming when it’s really quiet. So I always have background noise like soft music playing.”

DJ-“Again, it can vary to a degree, but really loud music environments are consistently the worst for me. This is probably also to do with single sided deafness, but trying to be social while dealing with tinnitus is simply hard and more stressful than it’s worth. There’s also the anxiety about impacting my remaining hearing, so there’s that.”

LC-“Usually, the day after a social gathering or a wedding (I’m a wedding photographer) is the worst. Stressful days also make it worse. If I’m having a bad gaze evoked tinnitus “spell,” then falling asleep can be very hard and frustrating since our eyes begin to move rapidly as we drift off. Those nights are exhausting and the worst.”

NT-“Concentrating in quiet environments, socializing with others.”

Anything else you would like to share about your tinnitus?

DH-“Waking up and recovering from my surgery was the hardest thing I’ve ever had to go through. And then add the tinnitus on top of learning to navigate single sided deafness was so difficult. But each day, it got better and easier to handle. I still have very hard days where I’m exhausted and overstimulated and will cry on my way home from working 12 hours as a nurse. But in the end, I’m alive to share my story. Every journey is different, and I’m so thankful for all of the resources and support out there that have helped.”

DJ-“I’m not sure why, but I feel that using AirPods for hearing assistance (decreasing background noise, amplifying voices in front of me) didn’t seem to bring out as much tinnitus reaction.”

LC-“There are helpful self hypnosis meditation videos available for tinnitus relief that are worth a try if you are struggling.”

NT-“Tinnitus impacts many people differently. Some people have more severe tinnitus than others. Tinnitus has major impacts on many aspects of life and overall well-being. Tinnitus has a significant effect on cognitive functioning. I personally have experienced trouble concentrating, difficulty following conversations, and trouble processing information. The brain has to work harder to interpret and process auditory information because it needs to filter out the ringing that occurs in people with tinnitus. The research and treatment options for tinnitus are limited, and increasing awareness of this condition and the implication it can have on people’s lives is important in making progress in understanding and treating tinnitus.”

There are many fabulous tinnitus resources out there. Because there is so much variety in experience and need, there are a plethora of different tools. A few resources if you are struggling with tinnitus:

https://livingwithhearingloss.com/2025/02/04/managing-tinnitus-there-are-options/