Success Is a Matter of Perception

It began over a year ago today. An uninvited guest that turned my world upside down. But I’m still standing, and in some ways doing better than before. This is my story of how I got better – may it help at least one person out there.

Having spent a fair bit of time on this forum, I feel the need to start with a few disclaimers:

• This is my personal story. I am not claiming that my experience applies to everyone, or even the majority. I am not portending to be some guru with all the answers.
• Yes, this is a habituation story. It’s about how I got better, without the tinnitus disappearing or the volume reducing. It’s still there all the time, it just no longer rules my life.
• I don’t feel like including too many medical details here (e.g. tinnitus cause, tinnitus type, experiences with ENTs etc.) since I personally don’t find that very relevant to my story. But if you are interested in this information, you may find it under a separate heading at the end of my post.

I didn’t panic for the first few days … Yet. Full panic mode set in only after visiting my GP on day three and not getting clear answers. I began to realise this might not go away … Ever. It was too much to comprehend. I could hear the screeching every second of every minute of every hour of every day. Over almost all ambient sounds, over the TV, over music (at safe volume), conversation, etc. HOW CAN I EVER LEARN TO LIVE WITH THIS? Yet, even then, I knew that I could if I really, really had to; I was just wishing for it not to be true. I wished it would just go away.

The night became my enemy. I had never had a panic attack before but was regularly visited by them now; it felt like a herd of elephants stampeding on my chest. Sleep was an impossibility. I tried all kinds of masking sounds, but they only seemed to make my tinnitus worse, i.e. literally ramping up the sound of my tinnitus. Whatever resilience I had left quickly wore down, until there was hardly anything left of the old me.

One week in, I called in sick from my (rather demanding) full-time job and ended up staying on sick leave for 2.5 months. There were more GP visits, ENT and audiology visits. It turned out I have some hearing loss, of unexplained origin, in my right ear. An MRI was done to rule out some really scary things. And that was it. The end of the road, medically speaking. Having done my Googling, I was aware that there was no cure, and I didn’t want to waste my time trying out dodgy treatments or endless medical consultations that would likely lead nowhere.

I decided at that moment that if the tinnitus would not go away, getting better was to be my one and only mission. I made two commitments to myself:

1. I would do whatever was required to get the anxiety out of my system – I felt I could probably learn to function with the tinnitus if I could just get rid of the perpetual anxiety.
2. I would start to take the best possible care of myself. I hated the tinnitus, but I also noticed that certain activities made it harder or easier to deal with. I needed to find out what worked for me.

These resolutions didn’t make me confident as such that I could really have my life back, but at least it gave me some sense of control and a way forward. I think at that moment I also accepted that this sound probably wouldn’t go away, and I would somehow have to find a way to still have a life, though it might not be my old life.

So, I spent the next few months finding out what would make me feel (at least marginally) better and applied those strategies religiously. Things that worked well for me were:

• Thai massage – I went twice per week, and it really helped against anxiety. I spent loads of money on this, but it was worth it.
• Yoga – I had already been doing yoga for years but now began doing it every day, whether at home or in class.
• Mindfulness meditation – After reading about how frequent meditation can actually change the structure of your brain* I enrolled in an 8-week course and kept up daily meditation for 3 months (I have since slipped).
• Walking. Lots and lots of walking.

NB: Just because these things worked for me, doesn’t mean they work for everyone. Nonetheless, they are pretty harmless strategies, so I would recommend giving them at least a try if you’re open to it.

Progress was slow. I would say the journey is still not over after a year, and it gets frustrating sometimes. I tried to be very kind towards myself and patient. This is, for many of us, extremely difficult.

About three months in, I was well enough to slowly venture back into the workforce although I never went back full-time (am working at 80% currently). I started picking up travelling, friends, hobbies etc.

One very important aspect in my recovery has been my volunteer work for Tinnitus Hub. It has been such an important outlet for me, and a great way to turn something bad into something good, by attempting to help others. @Markku has been instrumental in making this a very rewarding experience, and I hope to remain involved for a long time to come.

Since my recovery started, there have been numerous setbacks. Suddenly my sleep again takes a turn for the worse, or I get stressed and my tinnitus seems louder. I’ve come to see setbacks as a normal part of the process. I can handle them, as long as the overall trend is up. Even just last month, having had tinnitus for a year, it suddenly started bothering me a lot more again and I started listening for it again in a way I hadn’t done in months. I could swear it became louder, but it was probably just me paying more attention to it.

By now, my tinnitus is something that I consciously notice perhaps only 10% of the time. When I do hear it, it still seems quite loud, but I know there are people with louder tinnitus, and I also know that the same loudness one year ago bothered me a whole lot more than it does now. When I get engaged in an activity, I just won’t hear it anymore. I don’t use masking – though I acknowledge it works well for many, it just never did for me. Bedtime is still hard, but partly that’s also because I’ve always been bad at falling asleep; tinnitus just became an additional factor in that.

Looking back over the past year, I feel like I’ve been smashed into a million pieces, and then slowly, painstakingly put myself back together again. And the result is that I’m not the same person that I once was. My life is not the same. It’s harder in some ways; I’ve had to make some significant adjustments. I am obviously protective of my ears, I don’t go out as much as I used to, I feel much more acutely aware of how fragile our bodies are, and still suffer from anxiety occasionally.

But at the same time, I’ve gained so much. I’m more appreciative of the aspects of my life that are good. I’m grateful to have a body that is, for the most part, functional. I enjoy the good times a lot more. I take care of myself like never before. I’ve built up a level of resilience that makes me more confident in dealing with anything life throws my way.

And that’s my story. If you’re reading this and you’re a new tinnitus sufferer, I would like to give you hope. But the truth is, I can’t tell you what your journey will be like. I can only tell you that it’s not likely to be quite as gruesome as you’re perhaps imagining. For most of us, there is light at the end of the tunnel. And for those of you still struggling after many years, my heart goes out to you, may your burden become lighter soon.


Medical Details

• Tinnitus onset: October 2017
• Cause: one-sided hearing loss of about 20-30 dB across all frequencies, with a dip around 4 kHz
• Cause for one-sided hearing loss is unknown; an MRI did not show anything out of the ordinary
• Tinnitus mostly in hearing loss ear, occasionally in the other ear as well
• Tinnitus pitch: very high frequency whine, with an underlying lower frequency zoom
• Tinnitus volume: I would say moderate; I can hear it through/over most daily noises, e.g. when watching television, but not in the shower or a crowded restaurant
• Tinnitus variability: very little variation throughout the day, for which I count myself lucky; no significant increase or decrease since I first developed tinnitus a year ago
• Hyperacusis: no, thank god

* See for instance:
http://www.psyn-journal.com/article/S0925-4927(10)00288-X/abstract
https://www.frontiersin.org/articles/10.3389/fnhum.2012.00292/full
https://www.sciencedirect.com/science/article/pii/S0149763414000724

 

Dear Hazel,

Since you started supporting Tinnitus Talk as a volunteer you've made a great addition to the team. Beyond any doubt you've been instrumental to the success of our work and to the cause. You came to us wanting to turn your own struggles into something positive and I believe you have done just that. I hope you'll stay with us for many years to come. Thank you for your hard work, creativity and diligence!

Big hug,
Markku

 

Thank you! And I do plan to stick around for many more years to come. Looking forward to it in fact

Thanks for the kind words. I totally agree on the importance of gratitude. No matter how much life sucks sometimes ...

Thanks for the helpful suggestion. Yes, my ENT did mention this as a possibility, though he didn't consider it very likely, since I don't have any other associated neurological symptoms. And considering how difficult Lyme is to diagnose, I decided not to pursue this further.

Ed, thank you so much. Your kindness and generosity never cease to amaze me.


@Jack Straw and @PDodge, glad to hear my story helped in some small way.

@Deamon22, thanks for the acknowledgement!