My Story: A Little Bit of Hope for Anyone New to Tinnitus

Hello,

Firstly, there a lot of music references in here and so, if you’re someone who doesn’t advocate working with or being near music, you probably won’t like this thread much.
Music is my passion and my entire personality it would seem. I become depressed without it, as I’ve suffered horrendous depression and it’s the only thing that makes me feel happy and alive. I would like to say the following is my experience, I’m not saying it’s the same for everyone or advocating this lifestyle but I firmly believe making sensible informed decisions, while trying not to limit your life is best. If anyone gets some hope from this thread, that’s great.

I’ll be honest, I’ve been reading this forum for a while ( about a month) because I’ve had tinnitus since 2009 and I’m having a spike, well it’s up and down at the moment, I’m getting fairly quiet days again, which is nice. I think the spike was partly because I have had one of the worst years in a long time, due to issues with my job, which I can’t go into here but it’s an ongoing thing. It was also partly because tinnitus has been such a non- issue I didn’t put my ear plugs in soon enough at a pub gig that was too loud. I don’t blame myself, it was one of those things. I do think my poor body had had enough of the stress and anxiety of the year and that was the final straw. I’m being very kind to it at the moment, and starting again to habituate. How am I being kind? Wearing my ear plugs more, keeping away from loud noise, I do live in a city centre though, so that’s challenging. I’ve given live gigs a break for the rest of the year, which means I have missed out on two people I would love to see but for now I know that wouldn’t help my ears. I don’t use headphones. I’m changing my diet soon too. I don’t go clubbing, for no other reason than I’ve always hated clubs, nothing to do with Tinnitus.

What I can tell you is this, at first when I got tinnitus it was horrendous. I was depressed and isolated. I thought my life was over. Then I was referred to an audiologist and the ENT. Slowly, very slowly I rebuilt my life. I got some terrible advice from one ENT who suggested I could stand near the front at a gig and then move further back. I looked at this woman like she was insane..

This is what I did when I started to rebuild my life, it took about a year. The following isn’t meant as a brag, it’s meant to offer some hope that you can have a life:

1. I gained all the useful information I needed such as not using headphones, using earplugs in noisy places and then I stopped searching the Internet for tinnitus information.
2. I didn’t use forums, they can be positive for some people but at the time they didn’t help me.
3. I moved to a new city to live with friends and then on my own.
4. I had several lovely (albeit failed) relationships. Date musicians, they tend to have/understand about tinnitus.
5. I got the best ear protection I could afford.
6. I also enjoy quieter pubs, where I can chat to my friends and art galleries.
7. I went to university and got a degree
8. I got a side job as a music journalist. I was sensible though, this involves album reviews mainly, with a few live shows thrown in.
9. I see live music sparingly. I make sure I really want to see the band before hand and give my ears plenty of rest before and after. I tend not to stand near the front, choosing the back or side of the venue. I did stand at the front for Ezra Furman. That was just pure love and joy and was totally worth it (controversial to admit here, I know)
10. I took my parents to see The Rolling Stones. It was one of the best experiences of my life being able to do that for them. I will never forget it.
11. I interviewed one of my favourite punk musicians, Laura Jane Grace. It was a proud moment walking up those steps to meet her knowing my talent and creativity had got me there.
12. I publish books about film and people actually buy them
13. I write and perform standup comedy.
14. I try not to care what my tinnitus is doing

What I would say is this, if you are new to tinnitus then there’s some good advice on this forum but there’s also a lot of negativity and people trying to put the fear of god into other people, which isn’t useful and creates sadness and fear.

If you have all the facts then you can adjust your life and make decisions based on what you’ve learnt. I don’t advocate stopping doing what you love but I do advocate being sensible. There are some people who will say, never go near loud sounds again because ear plugs cannot protect you fully and give you theories about bone conducting sound. This is true and is basic (GCSE, if you’re in the UK) level science. However, my personal opinion is that I liken it to crossing the road. I really need / want to cross the road but there’s a chance I could get run over by a car. So, what do I do? I know I need or want to go over that road. I could stay on one side of the road for the rest of my life, meaning I had restricted myself because of the possible chance of being run over. Or I could use my knowledge to do everything in my power to protect myself while crossing the road, so using the crossing and looking both ways for traffic. Yes, there’s a chance I still might be run over but I made informed decisions and limited the risks as much as possible without stopping the activity entirely. That is how I prefer to live my life. Because it is about living, not existing.

 

Welcome! Nice way of not letting it get the better of you.

You say the tinnitus was a non issue. Does this mean it wasn't that bad/loud?

 

Thank you not always but some days it can be heard over the TV, the shower etc...I just got used to it and carried on. Sometimes, I talk to it and say, ‘oh you’re doing that are you?’ ...and then I get on with things.

 

What ear protection did you get?

 

I got acs custom moulded ear plugs for motorbike riders, rather than musicians, as they seemed to offer a bit more protection at 27 db. If you’re in the UK, Specsavers or Boots can make them for you. I also use foam plugs of a 33db reduction for gigs.
I mean, the thing is, mine has been a bit up and down today...it just got a bit louder while I was watching Masterchef . So, you do what you can, you know?

 

Where did you get the foam plugs? Have you got a link?

 

I can’t seem to copy the link but they were from Amazon and if you search for hero ear plugs they were the Ultimate Softness series of ear plugs....

 

Thanks for the pep talk. This is my first post. Been reading this forum for the better part of a year. I am also a musician with a masters degree in classical piano. I also interned as a composer in digital music. And I love to meditate. Last December, I hurt my ankle and the doctor prescribed meloxicam. I’d rather still be walking around with the tendinitis in my ankle than this. I took it for eight days and that was apparently enough. I just want to hear silence again. No one around me seems to have it and no one else is a musician so they don’t seem to know how sensitive I am to it, especially after training to hear odd frequencies for digital production. It’s helpful to “meet” another musician and I appreciate your post.

 

Hey @MisticRayn Thanks for replying. I wasn’t going to post again, as I find this place too unnecessarily negative for me - I’m not one for support groups / forums really but then I was notified of your reply.
Please don’t be discouraged from doing what you love, carefully, if you still want to. There is good advice here and some of the members are musicians BUT there are a lot of people who are not and simply do not understand the lifestyle. There are tons of musicians and DJs with tinnitus and they carry on...look up Owen Brinley from the band Department M, for one recent encouraging story. You don’t have noise induced tinnitus, so you might be alright in the long run. Treat your ears with kindness, get the best plugs you can, take regular breaks and don’t rush. I would try reaching out to find other musicians with tinnitus, as they will understand what it means to have career in this industry.