“There are also people dealing with this who let me know there were better days ahead” – Casey’s Story

Casey shares her tinnitus story, kindly sharing with us how she got tinnitus, how it affected her day to day life, and what support was available for her to be able to live well with tinnitus. Read Lydia’s story below:

Tell us a little bit about yourself

I’m 33, first started experiencing tinnitus nearly 4 years ago when I first began to develop endolymphatic hydrops (a variant of Ménière’s disease) however I didn’t get an official diagnosis until years later as there didn’t seem to be much understanding or knowledge of this condition from professionals.

I’m from Cheshire, I work in education and have a husband and 2 children-my favourite thing is to spend time with them.

When did you first notice your tinnitus, and what was that experience like?

I started to notice my tinnitus after a cold, which was accompanied by some low frequency hearing loss. My tinnitus at that point low a loud low roaring, which could have different tinnitus sound along with it.

How did tinnitus affect your daily life in the early days?

The experience of it was all consuming and it took over my life. I found it difficult to hear, communicate, concentrate and do the things I would usually do and enjoy. In the early days, there was no help, the waiting list for ENT was 12 months plus, and my GP couldn’t offer any help, support or advice. On my worst days I felt like my life was over.

What were the biggest challenges you faced when you were first trying to understand or manage tinnitus?

The biggest challenges when I was first trying to understand and manage tinnitus was the very long waiting lists to see ENT professionals. My GP couldn’t offer any support and I was stuck waiting which put me in a very low place mentally. Even when seen, ENT professionals seemed to also have little understanding, and I received wrong diagnoses until I eventually went private and was prescribed Betahistine which helped to bring some of my symptoms under control.

What helped you begin to cope or move forward?

I begin to cope and move forward by learning to have my own coping mechanisms and tricks to help mask it. My tinnitus fluctuates and changes tone which can be difficult, and I have good and some bad days, but I try to mask and ignore it as much as possible.

Did you find any support, advice, or strategies that made a real difference for you?

The support, advice and strategies I received that helped me were mainly off Facebook tinnitus support groups where I was able to accept that I’m not alone and there are also people dealing with this who let me know there were better days ahead. I used to love silence-I now hate it and always make sure there is background noise such as the radio, TV or fan-I even take my fan on holiday with me to ensure I can sleep!

Have you been able to return to any activities, hobbies or parts of life that tinnitus once made difficult?

I have been able to return to all of my usual activities etc, however I use ear buds during very noisy events such as firework displays, parties or concerts to protect my hearing, and also because very loud noises can make my tinnitus worse for a period.

What would you say to someone who has just been diagnosed with tinnitus?

I would say to them to reach out to support groups and find ways to mask as much as you can, this can really help to take your mind off it. Thinking about it too much really brings your attention to it and makes the situation worse.

What message or piece of encouragement would you like to share with others living with tinnitus?

There will be better and brighter days ahead. In the beginning it’s a huge life change and adjustment, but like anything you’re able to adjust and find ways and strategies, it’s always worth reaching out for support.

Why do you think it’s important to share stories about living with tinnitus?

It’s important to share stories about living with tinnitus to firstly give each other support and share tips and tricks, but also because there are power in numbers. This isn’t a rare thing to have anymore, and there desperately needs to be more research in this area.

Note: Casey is a placeholder name to protect the users anonymity