Level 1 Tinnitus Since Birth — Level 3-4 Since November 2020

Hi.

My name is Andrei, I am 27 years old and I have been reading this forum for a while now. I decided to join and write my own story as it may be similar to other people’s stories and it may help them - if not physically, at least mentally. I apologize in advance for any grammar mistakes or typos I may make, English is not my primary language.

For as long as I can remember, I have heard this ringing sound, similar to the noise old CRT TVs used to make. I don’t know if I was born with it or if I developed it at a very young age. My mum used to say that she had many arguments with my dad when I was under 2 years old because he would turn the TV on at a mid to high volume with me in the room. They didn’t get along well. Sometimes I think this is the reason why I have it.

Anyway, until I turned 14, I always thought that there isn’t anything wrong with it, I believed this is what everyone hears when there are no sounds. I would classify the intensity of that sound as Level 1 because that is my reference, I never had a ringing sound in my ear that would go under this level. Sometimes, in periods of stress or anxiety, mostly during school, it would spike to what I would say was level 2. It never skyrocketed and it never got to a level where it could keep me from focusing on daily tasks.

Then, I turned 14 and one of my closest friends told me he had tinnitus. He explained everything in detail and I could not believe it. It was like he was telling me my experience with it, except that it was his. My anxiety level got up with about 20% I would say and for a few months I tried to find a cure. Back then, I was still living in the old country and I had no access to Internet. Needless to say, some of the doctors I went to looked at me like I escaped a psychiatric hospital. Some of them haven’t even heard of it. I remember this specific nurse laughing in my face. Eventually, I just accepted it and managed to move on as it didn’t affect my life in any other way than going to Level 2 every now and then. I could cope with it pretty well. I would forget about it for weeks at a time sometimes.

All this has remained unchanged until the 27th of November 2020 when my AirPods Pro arrived. I wanted to get them for quite a while as I was really curious to find out why are they so popular. All my life I have used earbuds, 90% of the time at maximum levels. Mostly Hip-Hop and Rock. After a few hours of using them, the tinnitus would go to Level 2 and then it would come back to Level 1. I can’t say how long the transition would last because I didn’t pay much attention to it. Movies, video games, music, for absolutely everything I would use earbuds at maximum level. Never went higher than Level 2.

On the 27th of November 2020 I only used the AirPods for about 30 minutes and not on maximum level this time. I had them on about 50% volume (I can’t really say why, usually I would go full blast straight away, instinct maybe?). I had to run some errands immediately after and when I came back I noticed my tinnitus was to what I would say a Level 4, except the pitch was different now. It sounded like some kind of semi-mute birds were trying to chirp in my left hear/left part of my head. I thought to myself it was going to stop soon but it hasn’t stopped since. I would say however that it dropped down to level 3 in the left ear. I had some trouble sleeping ever since, I would wake up randomly at night and find myself not able to fall asleep again. I work as a lorry driver and in my line of work sleeping is the most important thing. The first night after this happened I only slept for 1 hour maximum, all night long. I thought I’m going crazy. To my surprise, the second night the pitch was actually worse, so even though I slept more, my anxiety levels skyrocketed. I thought that’s it, this is how life is going to be from now on and it’s only going to get worse.

I started researching on AirPods and tinnitus and I found hundreds if not thousands of people who claim that the AirPods have provoked or spiked in intesity their tinnitus. I have seen that people have many different opinions on what exactly caused all these problems. For me, it was clear: it was anything BUT the volume. I still don’t have an answer to what it is.

However, interestingly enough I have read a lot of comments from other people who claim that in their case the AirPods were an improvement for their tinnitus. Maybe for some people it was Placebo but I am certain that for at least a few of them it was real. I still don’t know what to make of it.

Curiously enough though, it appeared as only my left ear and my left side of the brain were affected. I stayed in perfect silence many times and I could not notice any sound in my right ear. I was confused, I didn’t know if that was always the case or if the AirPods somehow ‘cured’ my right ear but screwed up my left one.

And then, out of nowhere, 5 days ago, in the morning, this damned noise came in my right ear. What I would describe a Level 2 high pithced noise (different tone from the one in the left ear) started to grow with about a level per day in intensity. It would stay the same the whole day and then when I would wake up in the morning it would be a Level higher. All my life I have considered myself to be a tough guy, I have been through a lot, but this time it almost made me scream out of pure desperation. The left ear is a joke now compared to my right ear. I must mention that I was taking some Vitamin Complex (Centrum Advance) for a while when the right ear started. It may have a say in this, I have no idea.

My right ear has now two tones which appear to be noise-sensitive. The high tone comes in during silence and the mid tone comes in when there are sounds around. When I am outside I can notice it pretty clearly but still, I wouldn’t classify it as a Level 5. Keep in mind though that this is just my perception, it could be better or worse for other people. Anyway, when I alternate between noise and silence the tones switch between each other randomly. But in silence the high note always prevails which is good for me because the mid one I cannot stand. It sounds exactly like that sound TV stations broadcast when there is no signal. If only the mid level would be in there, I would easily classify it as a 6.

And I thought I had it bad. I read a lot of threads and I have learned about the suicide level, which would be Level 10, where tinnitus is so bad that you can never focus on anything else, no matter how much you try, no matter how many ENTs you visit and how many CBT sessions you do.

In my childhood, for about 10 years I have suffered of a skin dermatisis I think it was called which started from the head and made its way down through the years. It would itch, it would bleed, it would’t be nice. I visited what I recall to be at least 20 doctors and fortunately my mum had enough money for it. Not that it mattered. Thousands of pounds spent on medications of all sorts and nothing ever worked. One day, by myself, looking online, I found a gel which I still use to this day. It costs £5 and one tube is enough for 6 months. So not to say I don’t believe in doctors, but there are many conditions in this world that many of them have no clue about. And that’s not necessarily their fault.

So who knows, maybe it’s going to happen again now.

I am as empathic as I can be, specially towards people who suffer from higher levels of tinnitus and who would give the moon to anyone who would be able to bring their tinnitus down to a Level 4. I read crazy stories about it and it really made my skin crawl. I feel so sorry for you guys and I cannot imagine what someone like you goes through every day and every night. Keep in mind though that as time passes, research and findings of all kinds in medicine increases exponentially, so theoretically I cannot see a cure or a form of alleviation being very far away.

I know that nothing I say matters for someone who cannot function properly because of it but I will say only this. You HAVE to hang on. You HAVE to resist and you HAVE to stay alive. You never know, maybe one day like in many people’s cases it will simply go away or it will bring itself down to a lower level that you can live with. Or maybe in the next year or month something that we can call a cure will be available to all of us. Or tomorrow. What if it comes in tomorrow but you are not here anymore? I beg you to stay alive. Think about your loved ones. If you haven’t got anyone, think about me. That guy on the Internet who you don’t even know. I sincerely hope you take this to heart and you don’t take it as another cliche.

As a form of therapy, everyday I look at pictures of people helping people. For me, it works. I keep thinking that I am lucky to have eyes and hands and legs and I am happy to walk this earth. I have sincere hope that you will do the same. If not now, hopefully sometime in the future.

Stay strong. For yourselves, for your loved ones and for the random guy on the Internet.

P.S. If you want to talk to me about anything or simply just want to vent, feel free to PM me. Whatever it is. Whoever you are.

 

@Andrei33 Thank you for sharing your story. English is my primary language and yours is better than mine. I have suffered for 30 years with many tinnitus spikes. They are not pleasant and I go through a terrible time. I am in my 70s and usually habituate in 12-18 months. It is still early for me but I want to LIVE! I pray for better treatments or cure. G-d bless.

 

@Ken219 Thank you for being so kind! Sorry to hear about the spikes that you’re going through. I hope you would find some comfort in one of my favourite sayings in my native language: ‘The more pain a human feels, the more trust God has in him that he can carry it unshaken.’
May God bless you and your family.
I’m here if you ever want to vent.
Stay strong!