My 1st Year (Reactive) Tinnitus + Hyperacusis Anniversary — A Better Place

A year ago

It's been a year and a few days since I woke up in the middle of the night unable to move due to what was probably a flu virus induced inner ear infection which gave me severe vertigo. A few hours later, when the paramedics arrived, I lost all my hearing in my right ear. After some days on anti sickness tablets and steroid tablets, my vertigo improved well enough to drive but my hearing loss turned into horrific distortion and hyperacusis. Everything was loud, some sounds were metallic/electric sounding, hard to describe. Water running, eating crisps, foil, cutlery, mine and other peoples letter s's in conversation. These were some that I recall would sound incredibly loud and give me the same feeling as if it were nails on a chalkboard. Two weeks from the vertigo episode I developed a high pitched whistle/beep in the problem ear. My heartrate was continuously high, I was in fight or flight for a good few months. The tinnitus was reactive to any sound. I had to wear hearing protection in the shower and opposing most peoples experience, silence was my go to place. Life was hard, it was Christmas time, I couldn't be around the family (a then 6 month old daughter found her voice and an excitable 3 year old), they were too much for my ear. I hid away from life, cried to my wife, cried to myself and felt more down than anything I had ever experienced. The doctor was dismissive, only a repeated push got me in a queue for an ENT. I managed to get an MRI which was clear just after Christmas but the wait to see the ENT surgeon was months from there. I would wake up with very low tinnitus and it would build through the day depending on how much noise I would expose myself to. It was a tough time.

Today

I am in a magnitude better place than a year ago. I still have hyperacusis, I still have tinnitus but they are not as bad as they were. Once I had calmed my mind and got past the initial emotional response, which took around 2 months (!), I realised I was not going to get anywhere fast with the NHS so I booked a private tinnitus clinic in London. The audiologist tried me on an Oticon Minirite hearing aid which she programmed to restrict the input of sound at 6 kHz-8 kHz. This made my hyperacusis 90% better, instantly! I think even she was surprised to see the impact so I feel I got lucky here. This in turn reduced my tinnitus from an 8/10 to 4/10 which to me was a huge improvement. Add CBT, meditation and ear protection over the past year and I can say that I am mostly back to normal life.

I still have my days, today, now, it is reasonably loud, but there is no emotional reaction. I also know it's because I sat on a ride on lawn mower (with big ear defenders) and I've played around with my daughter who screams with laughter. It's there, it's annoying but tomorrow morning it's a 2/10 when I wake up.

I write this in hope that someone who may read this may take a breath and have hope that they may also have a better life a year from now. Small steps, month on month improvements, it's a long path and I managed to get to a better place comparatively quickly. I am lucky.

If I could offer any advice to anyone that has just started their journey with tinnitus/reactive tinnitus or hyperacusis, work on calming the body as much as you can. My world cleared so much once I wasn't full of constant adrenaline. It's exhausting. Know that when you get to this point, your world will improve. A cloud will lift and the emotional reaction will lower. It's easier to deal with life when you are not under huge stress.

I appreciate that everyone's tinnitus is different, and what worked for me may not work for anyone else. There are a lot of people suffering with these afflictions and I would think that most posts on here are of people asking for help so I would like to give this post as one of hope.

Best wishes to all,
Darren

 

Hello Darrenb111,

Your story definitely resonates with me. A lot of my symptoms were similar to yours in the beginning. Except I also had severe neck pain for 4 months (doctor found a lesion in my spinal cord likely due to an infection or injury).

After a few rounds of steroids, my neck has improved but the tinnitus has stayed.

I also had issues with people saying "s"'s as well and hyperacusis for the first 3 months. After getting off the fight or flight mode a month ago, my adrenaline levels definitely lowered but now I am feeling sad about my tinnitus.

I have an appointment to get hearing aids tomorrow, looking forward to returning back to normal!

 

Great to hear about your progression!

"Getting rid" of the negatively loaded emotional reaction towards it is such an important factor to get to the better place where you are at right now.

It's not always possible to change what it is, but there is room to change our response to it. However, every case and every individual is different.

 

It's now been 19 months since my onset of hyperacusis and tinnitus and I would like to update the above post to say I am now hyperacusis free.

If you've read the above experience, you will see that I was super sensitive to everyday sounds and that would create havoc with the loudness of tinnitus. As of last weekend I can now stand in a busy bar with music and chatter around me and not have any sensitivity to the sounds and this is with my hearing aid no longer in use.

I still have tinnitus, albeit very low now and I notice it maybe 10% of my day if that.

My toolkit was:

Sound Therapy
CBT
Meditation
Positive mind (as much as was possible under the strain)


I am so relieved to be where I am and would like to give this message to anyone who reads this that I am another example of how this can and will get better for most people if you work at it with all the tools available to you.

Best wishes to those in need,
Darren

 

I pray I can have a story like you. I feel like I'm on my death bed. I pray for everyone's recovery.

 

Hi @Darrenb111, I was diagnosed with labyrinthitis recently and I'm in crisis mode. I am going to start using Sound Therapy and CBT. Did you ever get physical therapy for the balance issues and what medications did you take that you think helped your recovery from onset? Thank you very much.

 

When I called the paramedics at the onset of the vertigo, they said it was most likely labyrinthitis. The vertigo got better after about a week but I had bouts of unsteadiness on and off for about 6 months, gradually getting less frequent. I didn't have any physical therapy. I only took steroids for the first week and anti-sickness tablets for about 2 weeks and then when necessary. It was very odd feeling as I would get motion sickness from scrolling on my phone or looking at any movement on a TV screen but, as said, this became less frequent over time.

 

Do you think the steroids made a difference in the end? I'm upset that I wasn't diagnosed properly and I didn't get steroids until way after my vertigo. I feel like I'm a lost cause at this point.

 

Can you please describe your approach in relation to sound therapy? Also, did your hearing aids actually amplify sounds or did you use them for some other purpose (I had hearing aids at one point that were just used for sound therapy)?

 

Apologies for not replying sooner, I hadn't logged in for a while.

I am told that the steroids probably helped regain some of my hearing and luckily within the speech range. I still have no hearing above 5.5 kHz but I can very much live with that.

I believe my audiologist and I got lucky with this as it was not initially set up for sound therapy. She set up the hearing aid, an Oticon More 1, to increase the midtones and decrease the hightones, all very slightly. This instantly seemed to help with my reactive hyperacusis. The plan was to reduce the increase and decrease of these over time, therefore making me non-reliant on the hearing aid.

The effect of this, however, was that I could hear static constantly where the midtones had been increased. It was very subtle. i wore this hearing aid every waking minute outside of a shower and after 18 months and gradual reduction of the amplification, I removed it completely.

I believe the hearing aid acted as sound therapy over this time.

I hope that makes sense. I'll be happy to share her technical description of how it was set up if needed.

 

@Darrenb111, you've articulated your story very well. 2 questions if I may?

1) Did you have bilateral tinnitus?
2) When you say you have no hearing after 5.5 kHz, do you mean zero or it drops to 90-100 dB?

Thanks for sharing,
Nick

 

Hi Nick47,

I had unilateral tinnitus and hyperacusis in my right ear. I never wore a hearing aid in my left ear.

My 5.5 kHz - 8 kHz dropped to 70 dB. I never knew this but just looked it up on my original audiogram.

Darren

 

Hi @Darrenb111,

I am very curious about your case description, because after having sudden sensorineural hearing loss 3 weeks ago (which fully recovered with Prednisone), I was left with tinnitus and what you described as:

I have exactly that, including when I speak! That is, when I hear the sound of my own voice. Have your distortions / metallic / electric sounds also improved? How long did the improvement take?

I am really happy for you!