Hi, I'm Rafal from Poland

[Rafalek73]

Hi, I'm Rafał from Poland, I'm 46 years old, I'm after childhood cerebral palsy. Tinnitus from November 2018 with significant deterioration from February 2019.

It all started in the morning of November 13, 2018, when I woke up with a lot of dizziness. I was taken to the hospital, given IVs, tests and home. I don't remember if I already had tinnitus. I will not describe the following weeks, but in short I had an audiogram that showed hearing loss in both ears, I had MRI of the auditory nerves - all right. I had tinnitus in my left ear until 4 February when I lost my balance and, turning over, I hit my head very hard against the wall. I lost consciousness for some time, was taken to the hospital, the CT scan showed nothing - home. Since that event, tinnitus from the ear went to the back of the head, a very loud noise with the sound of hot oil in a frying pan.
I have a hearing aid - actually nothing helps. I tried to commit suicide but was stopped. I take 1 tablet of Trititico 75mg (trazodone) for my sleep and 1/2 tablet of Paxtin 20mg for the last few weeks to calm me down.

My wonderful life has turned into a grim nightmare. I was born with a disability, but I haven't cried as much as I have for the last six months.

I live only for my fiancée, who loves me incredibly and keeps me alive. I promised her that I will do everything to survive 2-3 years, or maybe I will get used to it even though it is getting harder and harder. Only when I sleep I am happy.

 

[GoatSheep]

I'm very sorry to hear you're having so much trouble.

Be thankful you have a support system in your fiancée who loves you.

Many here can identify with the desire to commit suicide, myself included. I'm just trying to hang in there for my children.

Hopefully it will improve over time on it's own. I very new to tinnitus so I'm not the one to recommend therapies to attempt. Hopefully others will contribute. Possibly the new Lenire device could help. It's currently only available in Ireland though. Hopefully it's availability expands throughout the world in an expedited fashion.

 

[Harley]

I was born with a disability, but I haven't cried as much as I have for the last six months.

I'm really sorry about your luck.
I hear this quite a bit, when people with all sorts of disabilities get Tinnitus, they realize that their prior disability pales in comparison with this waking nightmare.

And yet it seems that the medical world is completelly unphased by this.
I feel your pain.
There are people on this forum who understand exactly what you are going through.

 

[Rafalek73]

Thank you for your words of support.

My noises are loud enough; to drown them out, I have to turn on the music on the verge of loud - very loud.

It wasn't like that at first. I fell asleep without pills, listened to a lot of music and headphones. Everything got worse since that fall.

I remembered that my noises didn't start in November 2018 and much earlier, but I heard them only at night and I was sure it was a new fridge so loud.

 

[Rafalek73]

I would like to find out more about people who have had loud tinnitus for a long time or is it true that the worst period is the first 2 years?

 

[Candy]

Most people get used to it, not just those who hear it at night time but those who hear it throughout the day. Look at the success stories category.

It's the toughest thing when it's new but time will help you adjust.
Sleep is essential for me, then getting on top of the anxiety. Once you've done that you are better placed to manage it.
For very bad days where I can't concentrate on much I use wearable noise generators. Some hearing aids have different masking settings.

Research is happening more and more, keep the hope and keep on going one day at a time.

 

[Tinniger]

with the sound of hot oil in a frying pan

I like this figurative description, that's what my tinnitus sounds like, too.
Its a hiss "sss", not an "eee"

Can you somatically influence your tinnitus?
I assume that the tinnitus is based on an irritation of the N. trigeminus.

Why did you get hearing aids?

 

[Rafalek73]

I like this figurative description, that's what my tinnitus sounds like, too.
Its a hiss "sss", not an "eee"

Can you somatically influence your tinnitus?
I assume that the tinnitus is based on an irritation of the N. trigeminus.

Why did you get hearing aids?

No, I can't affect the sound of my tinnitus.
I have one hearing aid, left. I also have a hearing loss on my right ear, but not the same as on my left, but with my audiogram I doubt I would qualify for Lenire.

 

[jjflyman]

No, I can't affect the sound of my tinnitus.
I have one hearing aid, left. I also have a hearing loss on my right ear, but not the same as on my left, but with my audiogram I doubt I would qualify for Lenire.

I'm so sorry for you health problems/tinnitus.

If your tinnitus came on suddenly before your fall, there should be a reason. The fall made it worse, but tinnitus that is cause by some sort of trauma will usually sort itself out (fade away) in 1-2 years.

It is possible your original tinnitus (and dizziness) is from a vitamin deficiency or possibly a reaction to a (new?) medication. You might want to see if any of your meds have tinnitus as a side effect, and maybe get some lab work on your blood to see if you have any vitamin deficiency. (or just start taking a good multi vitamin.)

Nobody deserves to have tinnitus, it is a cruel condition, and it seems only fellow tinnitus sufferers really know what it's like. People just shrug it off and say get used to it.
Please give it time to sort out, you may have significant improvement in the next year.

 

[Rafalek73]

I'm so sorry for you health problems/tinnitus.

If your tinnitus came on suddenly before your fall, there should be a reason. The fall made it worse, but tinnitus that is cause by some sort of trauma will usually sort itself out (fade away) in 1-2 years.

It is possible your original tinnitus (and dizziness) is from a vitamin deficiency or possibly a reaction to a (new?) medication. You might want to see if any of your meds have tinnitus as a side effect, and maybe get some lab work on your blood to see if you have any vitamin deficiency. (or just start taking a good multi vitamin.)

Nobody deserves to have tinnitus, it is a cruel condition, and it seems only fellow tinnitus sufferers really know what it's like. People just shrug it off and say get used to it.
Please give it time to sort out, you may have significant improvement in the next year.

I don't know why I had my primary tinnitus, but I suspect it was because of my hearing loss. My left ear has a PIAP of 500Hz, 1 kHz, 2 kHz and 4 kHz of 49dB and my right ear has a PIAP of 35dB. This is the data from a recent audiometer in a place where they sell hearing aids, so it may be a bit overestimated. I have a visit to the Hearing and Speech Centre in a month's time and the results are the most reliable for me.

None of the pills I take contribute to tinnitus.

Yes, you are right. Nobody gives support and understanding to a tinnitus person like the other tinnitus person.

 

[Rafalek73]

Hello.

I've had tinnitus from November 2018 with significant deterioration since February 2019. My tinnitus is loud, I can drown it out with sound, music from 85dB. I wear hearing aids. At first they reduced my tinnitus very much, but it did not last long.
Just a year ago I was completely devastated, I wanted to commit suicide. Suicidal thoughts are still there, if it wasn't for my fiancée I wouldn't have thought for a moment. But now I wouldn't be able to cause so much pain to a person very close to me.

I've been taking daytime antidepressant and Trazodone for almost a year. Currently, I do not take anything, and falling asleep is not a problem for me.
It is a big problem for me, especially since I am a disabled person. However, I no longer have panic attacks, fear, crying. Even when I try, I can't do it anymore. Total indifference. I also have good days when the noises are barely noticeable.

Is this the beginning of getting used to it?

 

[Juan]

Hello.

I've had tinnitus from November 2018 with significant deterioration since February 2019. My tinnitus is loud, I can drown it out with sound, music from 85dB. I wear hearing aids. At first they reduced my tinnitus very much, but it did not last long.
Just a year ago I was completely devastated, I wanted to commit suicide. Suicidal thoughts are still there, if it wasn't for my fiancée I wouldn't have thought for a moment. But now I wouldn't be able to cause so much pain to a person very close to me.

I've been taking daytime antidepressant and Trazodone for almost a year. Currently, I do not take anything, and falling asleep is not a problem for me.
It is a big problem for me, especially since I am a disabled person. However, I no longer have panic attacks, fear, crying. Even when I try, I can't do it anymore. Total indifference. I also have good days when the noises are barely noticeable.

Is this the beginning of getting used to it?

Yes, that's the beginning of acceptance, when your mind starts paying attention to the things you enjoy and can do and ignoring things like hearing loss or tinnitus.

 

[Ryan Jones]

@Rafalek73 im glad to hear you are doing better.

I too have very loud tinnitus. Mine sounds like loud crickets and I can hear it over everything except the while I'm in the shower or asleep.

I've had it since 2016 and am now able to ignore it most of the time time. Every once in a while it will change or get louder and I'll have to get used to it again.

I believe we can learn to live with this and not let it stop us from enjoying life.

God bless brother

 

[Paul Wilson]

I've had tinnitus since at least 5 or 6 years old. But it wasn't until two years ago that it got unbearably loud. And what's worse is that it sounds like a high pitched whining noise. Have you ever watched a movie or TV show where an explosion goes off and all you can hear is a whining noise? That's what I hear. But the volume varies. The only thing that's helped keep the volume of the tinnitus down is Ativan, which makes managing and dealing with it much easier. I'm not saying Ativan works for everyone, and considering that people's experiences vary drastically with it, I'd suggest doing just about anything else before trying Ativan. But as a last ditch effort to end the extreme suffering, maybe talk to a psychiatrist about it. Again, though, people's experiences with it vary, and the cause of the tinnitus almost certainly depends on whether or not Ativan can help with the loudness.

But keep talking to friends and family about it, posting in forums and reading other people's experiences, try out different white noises to mask it, and if you're into video games try playing with headphones on with the sound up if it doesn't bother you (makes for a great distraction for me).

It's very, very difficult to deal with, I know. The sound is bad, but the hopelessness of not having any way of quieting it really gets to tinnitus sufferers. It made me suicidal after a couple of months of doctors telling me they didn't know what was causing it or how to treat it. With Ativan I finally found relief but some people can't find anything. It seems the only thing lots of people can do is find ways to cope. And think about it this way; you've had tinnitus, a constant waking misery, for a long time now, and somehow you've been able overcome the urge to end your life. That requires incredible strength. Just remember- YOU ARE THE MAN! And as you share your story, your strength gives others the strength to carry on.

 

[Rafalek73]

I thank you all for those good words and full understanding.

 

[Bartoli]

@Rafalek73 im glad to hear you are doing better.

I too have very loud tinnitus. Mine sounds like loud crickets and I can hear it over everything except the while I'm in the shower or asleep.

I've had it since 2016 and am now able to ignore it most of the time time. Every once in a while it will change or get louder and I'll have to get used to it again.

I believe we can learn to live with this and not let it stop us from enjoying life.

God bless brother

Mine is a steady hiss but crickets can make me notice mine less. I do still 'feel' something's there even when out at night and the crickets are chirping away. Does listening to crickets mask yours?

 

[bobvann]

I know Rafalek73, some people elsewhere make up fantasy tales that everyone habituates no matter what. We all know this is not true. Subject / Patient / Victim blaming when one fails and gets scolded. I am 3 plus years in, and it is not letting up...

 

[bobvann]

Mine is a steady hiss but crickets can make me notice mine less. I do still 'feel' something's there even when out at night and the crickets are chirping away. Does listening to crickets mask yours?

Kinda. I did that yesterday on bike ride with daytime crickets.

 

[Rafalek73]

Mine is a steady hiss but crickets can make me notice mine less. I do still 'feel' something's there even when out at night and the crickets are chirping away. Does listening to crickets mask yours

Nowadays it is bad or even very bad. My tinnitus is so loud that nothing masks it. I will do anything to last another year, maybe two.

 

[dan]

Nowadays it is bad or even very bad. My tinnitus is so loud that nothing masks it. I will do anything to last another year, maybe two.

There are many levels of "non maskable" tinnitus... mild to severe.

I've read many accounts of people who can hear theirs over traffic and it's "mild" to them.

 

[frpp]

@Rafalek73 stay strong man, there are devices and medications on the way. In about 5 years we should all get some kind of relief and in 10 years this will all just be a bad dream.

Cool profile photo BTW. Anyone ever tell you you look like Anthony Bourdain?

 

[Rafalek73]

A week ago I had the quietest day since February last year and the 3 days before that were also good. Can this herald the arrival of good periods more often? Will there still be such fluctuations when you have hearing loss?

@frpp No, no one has ever told me before that I am similar to this actor; thank you