Almost 4 Months in — Woke Up in the Middle of Night with Raging Tinnitus

[AfroSnowman]

Hi all,

I've been lurking around quite a bit and figured I ought to do an introduction. I woke up in the middle of the night about 4 months ago with full blown raging tinnitus. Before that 2am wake-up I'd never had any experience with it at all. ENT suspects a viral event caused it but obviously I'll never know for sure. I have been focusing my energies on acceptance and have come a some way towards habitation. I have it bad enough that I hear it 24 x 7 and it is basically too loud or of a tone that makes it impossible to mask.

Anyway that is my story and I've been following along quite closely on those of you who have been trying Lenire. I wrote in almost 2 weeks ago and am still waiting a response.

Cheers.

 

[glynis]

@AfroSnowman,
Welcome to Tinnitus Talk.

A few things to check-
Ear wax
Virus
TMJ
Anaemia
Allergies/sinuses
Teeth grinding
Glue ear
Hearing loss
Stress
Neck problems
MRI to rule out other problems

Keep posting for support and make some friends along the way.

love Glynis

 

[AfroSnowman]

Thanks Glynis,

Fortunately I have pretty good health care and have gotten to visit a couple ENT's and got MRI's blood work, anti-virals, and steroids. Everything came back fine other than moderate hearing loss at 6000. Hopefully things get better, but sigh.....

Anyway thanks for the kind welcome.

 

[winstona]

Hi all,

I've been lurking around quite a bit and figured I ought to do an introduction. I woke up in the middle of the night about 4 months ago with full blown raging tinnitus. Before that 2am wake-up I'd never had any experience with it at all. ENT suspects a viral event caused it but obviously I'll never know for sure. I have been focusing my energies on acceptance and have come a some way towards habitation. I have it bad enough that I hear it 24 x 7 and it is basically too loud or of a tone that makes it impossible to mask.

Anyway that is my story and I've been following along quite closely on those of you who have been trying Lenire. I wrote in almost 2 weeks ago and am still waiting a response.

Cheers.

Welcome to the forum AfroSnowman! You are only 4 months in with this condition and there is a lot of time for it to improve. From my experience and the experience of many of us here in Tinnitus Talk, it's usually at around the 9 month to 1 year mark you will see improvements. For me, it took around 9 months to feel a lot better and now at a year and nine months I am starting to feel like myself again for the most part with real volume reduction. I am not 100% habituated yet but I hope to be in that state real soon.

A common cause of tinnitus is acoustic trauma. Have you been exposed to loud noises like loud music in a concert in the last little while?

 

[AfroSnowman]

Thanks for the welcome Winstona. You aren't the first person I've heard/read saying essentially the first year is the hardest. But thank you for the promising news that it will likely get better, it is soothing to my psyche to hear that.

I think I am doing well managing my head. I know that things happen in this life and this is better than a lot of other things like MS or being in a wheelchair. I have set my personal goal at being being happy and living a life even in the face of this challenge, just as I would if I suddenly found myself wheelchair bound. It is the life I have and it is up to me to live it well. Of course it is challenging and I still let self-pity or frustrations get the best of me sometimes, but less and less.

No I didn't have any recent acoustic trauma. I do wonder what caused my hearing loss at 6000 (~50 Db-though I suspect would do a touch better if I didn't have my tinnitus masking everything at that range) everything else comes in at a normal hearing range.

In terms of what might have caused the hearing loss, I slipped a disc last year and really used NSAID's heavily for close to a year. I also have worked for years doing aid work in Africa and have taken lots of long term anti-malarial drugs, I got exposed to a nasty disease where I had to be put on rifampin for 4 months, I've had bouts of malaria, dengue, and the unga-bunga virus , I've done war zone work and had some mortars, RPG's and gunfire in my vicinity, though not right next to my head, more like 20+meters away. On top of that I have never given too much thought to ears protection and have used all manner of chainsaws and whatnot now and then.

As I told my first very unhelpful ENT who was asking questions trying to find a way to blame me for my condition, "What I can I say, I've lived a life."

 

[winstona]

I think I am doing well managing my head. I know that things happen in this life and this is better than a lot of other things like MS or being in a wheelchair. I have set my personal goal at being being happy and living a life even in the face of this challenge, just as I would if I suddenly found myself wheelchair bound. It is the life I have and it is up to me to live it well. Of course it is challenging and I still let self-pity or frustrations get the best of me sometimes, but less and less.

Having a proper mindset to deal with this beast is usually half the battle. I am happy for you that you seem to be dealing with this condition rather well already only in 4 months. I am sure you will be on your way to habituation very soon while you wait for the Lenire.

 

[Vicki14]

Thanks Glynis,

Fortunately I have pretty good health care and have gotten to visit a couple ENT's and got MRI's blood work, anti-virals, and steroids. Everything came back fine other than moderate hearing loss at 6000. Hopefully things get better, but sigh.....

Anyway thanks for the kind welcome.

Did you notice your tinnitus got louder after the MRI by chance?

 

[Contrast]

As I told my first very unhelpful ENT who was asking questions trying to find a way to blame me for my condition, "What I can I say, I've lived a life."

It's good the ENT is asking questions. The useless/unhelpful ones are the ones that guess. Usually tinnitus is caused by noise trauma and the patient is in denial. I applaud a smart ENT that will catch up on the stereotypical behavior of patients to be in denial of what caused their tinnitus.

 

[AfroSnowman]

Did you notice your tinnitus got louder after the MRI by chance?

No it didn't. In fact little seems to impact it one way or another. I tried not drinking coffee or alcohol and it made no difference so now I drink lots of coffee and some alcohol. Originally noise and exercise seemed to trigger intense events, but I am slowly coming to conclusion that my tinnitus does whatever it is going to do. Just last night I gave up all sleep aids (as I have on and off since onset) and got only 5 hours of sleep, but today it seems about as loud, ever present and unmaskable as the day before when I got 8 hours. In fact this afternoon is moderate afternoon though I could use more sleep.

Weird the only thing that seems to do anything to it is stress, which sucks because my career and my skill set depends on being able to handle exceedingly high levels of stress.

 

[AfroSnowman]

It's good the ENT is asking questions. The useless/unhelpful ones are the ones that guess. Usually tinnitus is caused by noise trauma and the patient is in denial. I applaud a smart ENT that will catch up on the stereotypical behavior of patients to be in denial of what caused their tinnitus.

If mine was caused by noise, it was from noise exposure from years ago. My first ENT was a local one where I am deployed and she was fixated on a noise related event though I told her that I hadn't been exposed to anything in recent memory. Unfortunately it was only after I was medevac-ed to a first world country that an ENT figured from my symptoms that I had a viral event and prescribed anti-virals and steroids. Unfortunately by that time the damage was done.

Oh well stuff happens.

 

[Contrast]

If mine was caused by noise, it was from noise exposure from years ago. My first ENT was a local one where I am deployed and she was fixated on a noise related event though I told her that I hadn't been exposed to anything in recent memory. Unfortunately it was only after I was medevac-ed to a first world country that an ENT figured from my symptoms that I had a viral event and prescribed anti-virals and steroids. Unfortunately by that time the damage was done.

Oh well stuff happens.

I've done war zone work and had some mortars, RPG's and gunfire in my vicinity, though not right next to my head, more like 20+meters away. On top of that I have never given too much thought to ears protection and have used all manner of chainsaws and whatnot now and then.

 

[AfroSnowman]

View attachment 31399

Maybe, though I never had any ringing in my ears, not once, after moving a lawn or getting caught in the odd fire fight, and any substantial noise event was years ago. Maybe it was taking too many NSAID's for too long, maybe dengue or malaria or whatever else I've had laid the seed for this long ago.

I'll never know for sure. I know there was no temporally specific cause for this, no bad cold, no loud noise, no drug. It doesn't really matter why unless knowing can make it stop. I know I am not at fault, nor or you, for what happened to us. Bad things happen to people. We are all here for a short time, our physical forms are weak and imperfect and not meant to last forever.

It is horrible and non-sensical what happened to me and I presume you. The question "why me?" is natural. How can I not feel that way? Why has my life perhaps unalteringly been made worse? Why?

But the question is indeed nonsensical; there is no sense to it. Asking unanswerable questions to make sense of why, brings no solace to me. "Why?" brings me to a place where my mind is focused on my loss, not only for the moment but into the future which makes the loss so much more to bare.

I find more solace in the question , "Why not me?" Horrible things happen to people all the time. Happy healthy folks wake up in the morning with a shudder in their hand only to find out it is Parkinson's. People have children, what should be a great joy, only to find their child has profound autism and will require them to devote their lives to their care. I've worked for more than a decade in the world's hardest places. From ebola, to child soldiers, to massacre victims, to my last housekeeper who had to watch rebels execute her fiancé. I have seen so many people, so many broken people, who have found ways through their pain to keep on going, keep contributing, keep smiling. It is through hardship that our souls grow. I just need to find a way to embrace this opportunity for growth and not let myself be brought down by the pain of this moment.

If I can get better I will. If I can not then it is up to me to find my way through this challenge, find a way to bare this burden without making others miserable, to find my way through this endless screech and make it my silence, make my life joyful and productive again.

I'm not there yet, I have days where I don't feel that I will get there, but that is where my full focus and effort lays, that and getting Lenire to respond to my damn assessment form.

 

[Contrast]

I'll never know for sure. I know there was no temporally specific cause for this, no bad cold, no loud noise, no drug.

Causes aren't always temporary and specific.

Noise induced hearing loss and ototoxicity are two known causes you mentioned. IMO your cause of tinnitus is easily explainable. It is stereotypical behavior for new tinnitus sufferers to be in denial of what causes of their tinnitus. A smart ENT will anticipate this because they've seen it a million times.

is horrible and non-sensical what happened to me and I presume The question "why me?" is natural. How can I not feel that way? Why has my life perhaps unalteringly been made worse? Why?

Your life is very interesting compared to most people just reading your story.

I've worked for more than a decade in the world's hardest places. From ebola, to child soldiers, to massacre victims, to my last housekeeper who had to watch rebels execute her fiancé. I have seen so many people, so many broken people, who have found ways through their pain to keep on going, keep contributing, keep smiling. It is through hardship that our souls grow. I just need to find a way to embrace this opportunity for growth and not let myself be brought down by the pain of this moment.

You'll soon learn fighting Warlords in the Jungles of Africa is far easier then habituating to tinnitus.

 

[Fifth Business]

You'll soon learn fighting Warlords in the Jungles of Africa is far easier then habituating to tinnitus.

C R I N G E P O S T I NG

 

[Contrast]

C R I N G E P O S T I NG

>ETD
>noise

pick one

 

[Fifth Business]

View attachment 31411
>ETD
>noise

pick one

 

[AfroSnowman]

Causes aren't always temporary and specific.

Noise induced hearing loss and ototoxicity are two known causes you mentioned. IMO your cause of tinnitus is easily explainable. It is stereotypical behavior for new tinnitus sufferers to be in denial of what causes of their tinnitus. A smart ENT will anticipate this because they've seen it a million times.


Your life is very interesting compared to most people just reading your story.


You'll soon learn fighting Warlords in the Jungles of Africa is far easier then habituating to tinnitus.

I guess I will be leaving this 'support group' due to the toxicity. Too bad it would be nice to have a sounding board sometimes but not worth the risk of having someone root against me. I won't be looking at or answering this thread anymore, so enjoy getting your last word of negativity Contrast.

I will continue doing my best to be positive and control the things I can.

Love to all

 

[Contrast]

I guess I will be leaving this 'support group' due to the toxicity. Too bad it would be nice to have a sounding board sometimes but not worth the risk of having someone root against me. I won't be looking at or answering this thread anymore, so enjoy getting your last word of negativity Contrast.

I will continue doing my best to be positive and control the things I can.

Love to all

It's still true that noise caused your tinnitus. Also kudos for your ENT being exceptionally good. Usually people complain that ENT's are useless because they fail to recognize noise induced tinnitus. Good luck with that African War Lord stuff

 

[AfroSnowman]

Due to a helpful soul I figured out the ignore button. All is well.