My Story (PET, Hyperacusis, TTTS, Tinnitus, Acoustic Shock Disorder)

[imtired77]

Hey everybody!

I am kind of freaking out when writing this, but I will do my best to give you the most detailed story possible.

I am 18 years old and have been struggling with ear issues since 8 months ago when I started noticing how my voice sounded too loud when singing. Like way too loud and I also had this feeling that I could hear myself double (autophony). I also started experiencing noise sensitivity and spasms in my ears from certain harsh sounds. The ENT I went to had no idea what was wrong with me. Now I know that it probably was PET (Patulous Eustachian Tube). However, it got a little bit better until I had a loud smack in my headphones 3 months later. Afterwards I felt fine but an hour or so later I started feeling extra sensitive to noise and the muscle in the ear started spasming a lot more frequently. I also noticed a faint ringing in one of my ears, but figured this would go away. The first two weeks or so were horrible. I was in such shock that I kind of just isolated myself in despair and just flicking on a light switch or talking to someone would make my ears spasm. I also didn't know that you weren't supposed to use headphones afterwards or that you should use steroids and today I feel so sad for not knowing that.

At that time I didn't know what was happening to me, since I had experienced noise sensitivity earlier and thought that this would pass. It didn't. The ENT I went to had no idea what was wrong with me and the hearing test I did showed a decrease of 10-15 dB on 125 Hz and 250 Hz. The ENT checked my ears and said that everything looked fine and he also performed a microsuction which I've also learned is bad for you. This was about a month after the acoustic incident. Since I am a singer, I tried to sing but it did not work very well and I was in such distress over the fact that just speaking would set off this reaction of my muscles spasming in my ears. So the acoustic incident happened in October, I went to the ENT in November, and shortly afterwards I almost completely stopped using headphones. I should note that I've always been extremely careful with my hearing and always used very low volumes, so this has been extremely stressful and heartbreaking for me.

After the visit at the ENT I tried to continue with music and worked mostly in the studio on monitors on pretty low volume. Then I got COVID-19 and the tinnitus got so much worse and started in the left ear as well and I could barely sleep. After COVID-19 around Christmas I felt better again and I could even do some singing that felt okay, although I still experienced aural fullness, autophony and tinnitus.

In January, I got vaccinated and that was when the nightmare began. Suddenly everything was painful and the ringing in my ear was so loud that I could hear it over other stuff. I also felt pain at noise and started to experience numbness in my ears, mostly the right one. I also started experiencing a lot of eye floaters. Eventually it got better, but singing was really hard and I almost felt nauseous afterwards. Then it got better again and I would experience some good days, some bad days and sometimes an unexpected noise would set me back. In March I felt like it took a top great toll on my mental health and so I tried to get help again. The same ENT I saw in November met me again and I told him about my symptoms and that I believed it to be a combination of PET and ASD. I should add that using nasal spray for two weeks did improve my TTTS remarkably before it stopped working again, so I'm hopeful that getting my tubes in order will relieve at least some of my symptoms. The ENT only suggested me therapy and massage. Now it's April and I've ordered a bottle of PatulEND and got in touch with a doctor online who took my problems seriously and would contact some of her colleagues for help.

My hope is that I will be able to get relief through PatulEND but also through TRT which isn't that easy to get here. One thing I've found working is pink noise beside my bed. That almost completely masks my tinnitus and I also have it put on during the night. The numbness in my ears has come and gone and is sometimes worse. When it is worse, it tends to be getting even worse by vocalising. From what I've understood, that is a typical TTTS symptom that means the trigeminal nerve gets inflamed. However, it shouldn't affect your hearing or damage the nerve, which feels reassuring at least.

So the eye floaters are very much there, the numbness has come and gone and I've taken a break from singing. The tinnitus in the right ear is not as bothering throughout the whole day and especially not with pink noise. Head massage has also given some instant relief before returning again. I am thinking about eating some anti-inflammatory, but at the same time that wont work since I've just started eating antidepressants. As you can imagine, my situation as a musician is not very fun. One thing I've also started taking is Magnesium.

I have a cold right now and today I have had a whooshing sound in my left ear (the one that was the most problematic with the PET).

I think that was it. I would love to get some tips and advice from you guys and I've seen that @Michael Leigh has had a lot to information to share, so I hope that this post will reach him. Of course I'm worried about the future and to what extent I should protect my ears to not make the hyperacusis worse. I hope to one day be able to use headphones again and sing. So far, I have not used earplugs because I've wanted to get used to noise again and the tinnitus also gets very loud when plugging up the ears. This journey has so far been a nightmare and I can only hope that the future gets better.

P.S. Should I try to get my hands on Prednisone? If it gets worse again I mean. Or is there any medication in general you think I should try?

 

[Michael Leigh]

Hi @imtired77.

I have only just seen your post. I have copied it and will reply later and hope that's alright.

Take care,
Michael

 

[imtired77]

Update: I just bought NAC and B12 since I feel like I'm having a spike with increased tinnitus in my other ear and also more spasming.

 

[Michael Leigh]

Hi @imtired77.

The most common cause of tinnitus is exposure to loud noise and typically, it is listening to audio through headphones, earbuds, or headsets at too high a volume without realizing it. Using headphones for too long a duration without giving the ears sufficient rest can cause tinnitus too even though the volume might not be loud.

The fact that you are a singer, use headphones regularly and have a home studio, leads me to believe most, or all your symptoms are the result of noise-induced tinnitus with hyperacusis.

You might also have PET (Patulous Eustachian Tube) due to the symptoms that you mention but I tend to believe you don't because your ENT doctor would have mentioned it after you had tests. This is his area of expertise. Noise trauma to the auditory system with hyperacusis in the early stages, can cause similar symptoms that you describe as PET, because I had them when I developed tinnitus with hyperacusis 25 years ago.

You have mentioned TTTS (Tonic Tensor Tympani Syndrome). People with tinnitus can develop this condition and it's closely linked to stress and anxiety. If you do have it hopefully with time it will improve.

Since you have been feeling this way for 8 months, I think you should try to see an audiologist that specialises in tinnitus and hyperacusis treatment. TRT or CBT can be helpful but before going down this route, you might want to try some self-help first and I have a few suggestions.

Try giving your ears and yourself complete rest for a while. If possible, stop singing for 4, preferably 6 weeks. Don't listen to any music in your home studio through speakers. The idea is cause your ears the least amount of fatigue as possible. I also recommend that you don't listen to audio through any type of headphones even at low volume. This includes earbuds, AirPods, headsets and noise-cancelling headphones.

If you have a small portable radio/stereo that should be fine to listen to music and keep the volume at a comfortable level.

Tinnitus can make a person feel very stressed and I suggest you talk things over with your family doctor, who may advise that you take a prescription medication to help relax you. You can also try something herbal like St John's Wort. However, discuss this with your doctor before taking.

Please go to my started threads and print the following posts mentioned below. Take your time and read them and refer to them often. This way you will absorb and retrain the information better than reading on a screen.

New to Tinnitus, What to Do? Tinnitus, A Personal View, Hyperacusis, As I See It, The Habituation Process, How to Habituate to Tinnitus, Will My Tinnitus Get Worse? Tinnitus and the Negative Mindset, Acquiring a Positive Mindset, The Complexities of Tinnitus and Hyperacusis, From Darkness into Light, What Is TRT And When Should It Be Started?

Tinnitus can affect our mental and emotional well-being a lot. Stress makes tinnitus worse and tinnitus makes stress worse. It can become a vicious cycle. By taking your time to read my articles, they will help you not to feel so threatened by the tinnitus. With time you will start to feel more positive.

Give yourself 4 to 6 weeks to pursue other interests that don't involve composing music or signing. I know this might be difficult but please try it.

You are young and this should work in your favour by helping you to make a good recovery. I usually advise anyone that has noise-induced tinnitus, not to use headphones even at low volume, as there's a risk the tinnitus can be made worse. Please understand this is only my recommendation, ultimately the decision is left to you if want to continue using headphones.

Keep taking the Magnesium and Ginkgo Biloba if you can. I was advised by an ENT doctor many years ago, that he advises all his tinnitus patients to take them. Discuss this with your doctor before taking but I have never had any problem with them.

Hope you start to feel better soon.

All the best,
Michael