I Was Habituated — Nine Years Later, Tinnitus, Hyperacusis, Headaches and Ear Pain Are Back

[Damocles]

I just hope you'll get your answers.

I didn't get mine, like a lot of people here, but it's partially my fault for not doing all the tests.

In the end, the ENT told me that I'm gonna have good days and not so good days, and there's not much I can do about it but avoid loud sounds, high temperature exposure, stress, try to fix my nasal septum, etc.

I probably didn't have to pay so much money just to find something that I already knew, but I had to do it.

Still thinking about this every day.
I feel there's more about it than what all the doctors told me.

It's very frustrating not being able to do something about it, especially since I'm also a doctor...

Oh, have you had a septoplasty procedure @aura?

 

[aura]

Oh, have you had a septoplasty procedure @aura?

No, I have a deviated nasal septum and I have to fix it, because after every common cold I have sinusitis...

 

[Taw]

I just hope you'll get your answers.

I didn't get mine, like a lot of people here, but it's partially my fault for not doing all the tests.

In the end, the ENT told me that I'm gonna have good days and not so good days, and there's not much I can do about it but avoid loud sounds, high temperature exposure, stress, try to fix my nasal septum, etc.

I probably didn't have to pay so much money just to find something that I already knew, but I had to do it.

Still thinking about this every day.
I feel there's more about it than what all the doctors told me.

It's very frustrating not being able to do something about it, especially since I'm also a doctor...

I understand, I don't think I will find anything in the tests, but I just want to check all possibilities, so I have peace with my self that I tried everything. The next step is to use Allianz's "second opinion" feature (it's in my subscription medical plan), there will be a committee with international doctors who will look over my papers. Not much hope there either, but I want to keep trying.

For me it's clear that the doctors don't know too much about this, no one knows unfortunately. They are still searching for the cause of tinnitus, and there is no answer.

 

[aura]

I understand, I don't think I will find anything in the tests, but I just want to check all possibilities, so I have peace with my self that I tried everything. The next step is to use Allianz's "second opinion" feature (it's in my subscription medical plan), there will be a committee with international doctors who will look over my papers. Not much hope there either, but I want to keep trying.

For me it's clear that the doctors don't know too much about this, no one knows unfortunately. They are still searching for the cause of tinnitus, and there is no answer.

I think your Allianz insurance will cover the costs, so maybe it's a good idea to do all the tests.

One thing that I liked is that he was the only doctor that seemed to understand what a person with hyperacusis is going through.

He said that it would have been better for me the other way around, having hearing loss, than what I'm dealing with now.

Just by looking to the test results he said that I am very sensitive to sound and he was the first ENT that told me that.

Too bad he didn't come up with a cure

 

[Taw]

He said that it would have been better for me the other way around, having hearing loss, than what I'm dealing with now.

Yes, we totally agree on this, I think 90% of the hyperacusis sufferers did not know that this abomination even existed. I didn't.

I thought: ok, I may lose some hearing (like my father, who worked for 50 years in noisy environment), I will buy a hearing aid and that's it.

But I never thought that I will have pain and sensitivity in such that my life will completely change for the rest of it, I could say.

No one teaches you in school about how bad the noise is.

 

[aura]

No one teaches you in schoo

This is the last thing on someone's mind.

Just think of all the nights that we spent in clubs... The music was so loud that you had to scream to be heard.

I would have never imagined that one day I would live what I'm living now.

Oh, and something else... Have you ever seen a Romanian worker using hearing protection? How come they don't have hyperacusis as well? They all seem very happy and relaxed

 

[Damocles]

No, I have a deviated nasal septum and I have to fix it, because after every common cold I have sinusitis...

Same @aura. I have a deviated septum and have needed a septoplasty for years, but have honestly been too scared to go in for the procedure.

Seriously, I'd like the damn thing fixed (it would be nice to be able to breathe properly: and I constantly have this nightmare where I get taken hostage and duct taped around my mouth by the "bad guys", then suffocate because they assumed I could breathe through my nose).

But I mean: 1) what if I have the operation, then wake up and my tinnitus has increased by a factor of 10, because they used a circular saw while I was sedated or something...

and 2) I just have a fear of being given general anaesthetic... in general

 

[aura]

I constantly have this nightmare where I get taken hostage and duct taped around my mouth by the "bad guys", then suffocate because they assumed I could breathe through my nose).

This is weird and awesome in the same time because I'm having the same nightmare!

I can breathe properly (on a daily basis), but when I catch a cold everything falls apart.

I have to use a nasal decongestant and I become addicted in one day.
Then I have to taper it down for a few weeks. In the meanwhile, I imagine myself tied to a chair with duct tape on my mouth and trying to breathe.

I assume the adrenaline would help for a few seconds/minutes but then it will fade away, leaving me in a desperate struggle for a breath of air.

nd 2) I just have a fear of being given general anaesthetic... in general

I have recently undergone a procedure (upper endoscopy) while being sedated with Propofol.

Now I understand why it was the main ingredient of Michael Jackson's night cocktails.
That sh*t kicks in in seconds!
I barely got to say "whoa" and I was completely gone!

Anyway, anesthesia wasn't really my favorite decision.
I'm really scared of not waking up, but the doctor didn't agree with me on this one.

I went through the same procedure a few years ago without being sedated and it was more than ok, but I guess it' s easier for the doctor this way because you're not moving/having breathing difficulties or having a gag reflex/etc.

what if I have the operation, then wake up and my tinnitus has increased by a factor of 10, because they used a circular saw while I was sedated or something...

Thank you. As if I wasn't overthinking enough...

Well, I hope it's just a simple septum straightening procedure, not the fkn Texas chainsaw massacre!

 

[Exit]

Crazy nose people...

I thought we were ear people...

 

[aura]

Crazy nose people...

I thought we were ear people...

E, N & T!

We're waiting to hear stories about your throat now

 

[Exit]

E, N & T!

We're waiting to hear stories about your throat now

Stupid E N Ts

No, no, thank you, no!

No big hoses down my throat, thank you very much...

I leave that job for you and @Damocles

 

[Damocles]

Well, I don't know anything about throats.... but I know you've probably spent too long on tinnitus forums when @Exit is calling you crazy... O___O

 

[Damocles]

Magic: Arena and Colin McRae DiRT Rally 2 in VR with a force feedback wheel and pedals and an H-shifter, actually.

Should have guessed it would be something like this, based off the fact you're a motorcyclist/adrenaline junkie; didn't have you pegged for a D&D nerd though...

My guesses were based on my own current obsession with the Pokemon games. I remember laughing at my younger cousin's love of Pokemon, thinking how ridiculous all them "pocket monsters" looked, only to find, when I played it, that the game is deep as f*ck.

But agreed: if I had to work on the development of any of these games, I would probably come to hate them very quickly.

The ditch digging was to fortify our garden against groundhogs, which I find charming but boy will they do in your tomatoes, cannabis or anything else they lay tooth on.

I've never seen a groundhog in real life, but I've always imagined that if I did, they would be charming; now I can finally die happy knowing a real American outdoorsman has confirmed this for me!

 

[Taw]

@aura, can I ask you something? For your initial consultation with Dr. David Lucian, what was your appointment type?

He has 2 types:

- initial consultation (30 minutes), 900 RON
- second opinion (60 minutes), 950 RON (150 discount for tests).

On the site it says that you don't need a reference (trimitere), but on the clinic's website comments he personally commented that you need a reference to him for a second opinion.

I am a bit confused and I don't want to make him mad, I read a lot of negative stories about him in reviews (he refused to see someone who came from far away just to see him or he cancelled the appointment the day before, etc).

I don't have a reference to him but I still want to get the 1 hour appointment.

Thank you.

 

[aura]

@aura, can I ask you something? For your initial consultation with Dr. David Lucian, what was your appointment type?

He has 2 types:

- initial consultation (30 minutes), 900 RON
- second opinion (60 minutes), 950 RON (150 discount for tests).

On the site it says that you don't need a reference (trimitere), but on the clinic's website comments he personally commented that you need a reference to him for a second opinion.

I am a bit confused and I don't want to make him mad, I read a lot of negative stories about him in reviews (he refused to see someone who came from far away just to see him or he cancelled the appointment the day before, etc).

I don't have a reference to him but I still want to get the 1 hour appointment.

Thank you.

Hey, Taw.

I opted for the "second opinion" type because that was the only one available at that moment.

Plus, it seemed to be the "premium package".

I don't remember bringing a reference but the best thing you can do is call them.
From what I recall,they told me that I don't need the reference when opting for the "second opinion" type.

You do have to pay in advance and send them all your tests via email.

I know about the negative stories but I didn't have any kind of problems, he was more than ok.

So I think the best thing is to call and ask about the reference.

Good luck and keep us updated!

 

[aura]

For better and for worse, this is my 7 month update:

Things are not going very well.

I woke up a couple of days ago with this high pitched sound in my right ear that didn't go away.

I have a pretty loud hissing in both of my ears and head, typewriter tinnitus only from time to time and lasting for a few seconds, a sweeping sound in my left ear that I didn't have before, a strange alienish insect sound and a pretty intense " eeee" in my right ear , sometimes in the whole head/stereo.

I also have more frequent episodes of fleeting tinnitus.

Over the last weeks/months my tinnitus somehow remained the same, but my ability to cope with it improved.

I've also seen improvements regarding earaches, ear fullness and hyperacusis.

And now, all of a sudden, my tinnitus is more intense (I can hear it during the daytime), headaches, ear fullness, earaches,insomnia and sound sensitivity are back.

I haven't been exposed to loud sounds lately.
It has been a stressfull period because of an accident that I'm still recovering from and a lot of work, but that's about it.

From what I've noticed, lack of sleep, stress, loud sounds, eating in excess (sweets, junk food), and weather changes make it worse.

But in the same time the worsening can appear all of a sudden and I'm wondering if this isn't a sign of the disease (whatever that is) progressing.

So I started with the supplements all over again, hoping that I can go back on track, but I confess that I am pretty scared and in a bad state again.

I'll keep you updated.

 

[Juan]

@aura, just curious, these were the prices when you visited Dr. Lucian David? €180 EUR? I never heard of prices like this for a consultation... these are posted on Clinica Urechii website.

Consultatie initiala ORL
dr. Lucian David (calendly) 900 lei

"Consultația programata si achitata prin sistemul pay-pal nu necesita confirmare si nu poate fi anulata/reprogramata"

That's pretty crazy, a very high price...

 

[Juan]

I opted for the "second opinion" type because that was the only one available at that moment.

Plus, it seemed to be the "premium package".

It is interesting to see that healthcare is becoming worse everywhere, all about money and ripping off patients.

Here in Spain we have the "3 visit" system, which is used by doctors and clinics to rip off insurance companies and force patients to go to any doctor 3 times to get anything done.

First visit: useless chat
Second visit: tests (because mysteriously it cannot be scheduled the same day as the first visit)
Third visit: have a look at test results and doctor's opinion

Some clinics do all this in one visit, which is the normal and reasonable thing, but the trend is towards the "new 3 visit system"... nonsense...

 

[MindOverMatter]

You will get back on track again @aura!

I believe the main reason for this temporary worsening/setback is stress related as you did mention.

When the body is tensed up by stress, there may be periods where tinnitus and hyperacusis changes, as the mind and body is more vulnerable when in such state.

Once you get more calm again, and get the stress and sleep under control, you will have more control over this "situation" yet again - and things will eventually and hopefully fade down to more of a baseline level.

It has happened before, which is a good starting point for you in knowing that it should happen again.

 

[aura]

Thanks, @MindOverMatter!

Supportive and positive as always!

 

[Tanni]

For better and for worse, this is my 7 month update:

Things are not going very well.

I woke up a couple of days ago with this high pitched sound in my right ear that didn't go away.

I have a pretty loud hissing in both of my ears and head, typewriter tinnitus only from time to time and lasting for a few seconds, a sweeping sound in my left ear that I didn't have before, a strange alienish insect sound and a pretty intense " eeee" in my right ear , sometimes in the whole head/stereo.

I also have more frequent episodes of fleeting tinnitus.

Over the last weeks/months my tinnitus somehow remained the same, but my ability to cope with it improved.

I've also seen improvements regarding earaches, ear fullness and hyperacusis.

And now, all of a sudden, my tinnitus is more intense (I can hear it during the daytime), headaches, ear fullness, earaches,insomnia and sound sensitivity are back.

I haven't been exposed to loud sounds lately.
It has been a stressfull period because of an accident that I'm still recovering from and a lot of work, but that's about it.

From what I've noticed, lack of sleep, stress, loud sounds, eating in excess (sweets, junk food), and weather changes make it worse.

But in the same time the worsening can appear all of a sudden and I'm wondering if this isn't a sign of the disease (whatever that is) progressing.

So I started with the supplements all over again, hoping that I can go back on track, but I confess that I am pretty scared and in a bad state again.

I'll keep you updated.

Sorry to hear this, Aura.

Improvement is very rarely linear, and it's really common to have temporary 'setbacks' with tinnitus - especially in the first year!

If it helps - my tinnitus will often go through stages where it is shockingly loud, and all kinds of new sounds come in. But it has always returned back to the 'original' tinnitus. At first, it used to really distress me, but now - because I know it is most likely temporary - I am not anywhere near as distressed by it, so I can go on as normal until it reduces again. So your reaction to the fluctuations should improve over time as well.

I hope it improves for you soon.

 

[aura]

So things are getting worse.

Today was the worst day by far.

The sweeping/static noise in my left ear (my good ear till now) is so loud now that I can hear it daytime. It's getting louder hour by hour, minute by minute.
Because of that and the hissing it feels like I'm not hearing as good as before. My ears feel blocked and I have some sort of burning sensation in the ear canal.

I don't know what's happening and I'm freaking out.

 

[MindOverMatter]

It will change for the better @aura, but you need to lower your stress levels and anxiety, and get back in control.

Break the difficult and negative cycle you are in right now.

There isn't necessarily no answer to this - why this and that is happening. No diagnosis and no set prognosis. For most of us I believe.

But, there is a great chance of progression for the better once you get control over your anxiety, and the fear of getting constantly worse and searching for answers. Because you might not find no specific answers, and it might not do you any good (given you already been to specialists and so on).

I do believe some sort of counselling and CBT could be a good starting point for you now/in this state to sort of start turning things around, and to get in a position to get back in control of your mind. Don't let tinnitus control you like now.

It is hard, but it is not hopeless.

 

[aura]

Last night was horror.

I went to bed at 2-3 AM.

I woke up after 2 hours with a new, loud "eeeeeee" in my left ear (that was my good ear).

At first I thought that it was the sound that I was usually hearing in my right ear and now it somehow moved to the other ear, but no!

There were 2 distinct sounds, 2 different tonalities, one in my left ear and the other in my right ear.

I panicked but somehow i managed to go to sleep again,only to wake up after another 2 hours of nightmares in the loudest "eeeeeee"that i have ever heard.

Just like a fleeting tinnitus, not as its maximum point but rather when it starts to disappear.

Only this time it didn't dissapear and I had a strange sensation of aural fullness.

I waited for a couple of minutes and ended up having the biggest panic attack ever.

I woke my husband up, he tried to help me but there wasn't much to be done.

I started crying and shaking.

It felt like everything was out of my control.

So I did something that I haven't done since February, I took a Xanax.

Thank god, after about a half an hour I fell asleep for 4 hours.

I woke up hearing only my base level tinnitus (the "eeeee" was still there but at an acceptable level) an being afraid to talk, to move, to breath...

Now, the tinnitus returned to my base level, but louder. I still hear that " eeeeee" but not as loud like last night.

So in the last days I got 2 more tones in my good ear, a sweeping sound and an intermittent " eeeee".

Add to that the bilateral hiss, the typewriter tinnitus, the alien insect and the super loud "eeeeee" that i had last night and you have the perfect recipe for a disaster. Not to mention the hyperacusis.

I don't have an explanation for these new tones. I didn't expose myself to loud sounds, I haven't been sick or something, I tried to eat healthy, and took my supplements.

At this point, I don't know what else should I do.

I guess the disease is progressing and there is nothing else I could do but accept it and go with the flow.

I can manage my old sounds. But not the new ones. Not coming like this, out of the blue, not with this intensity.

 

[Exit]

Last night was horror.

I went to bed at 2-3 AM.

I woke up after 2 hours with a new, loud "eeeeeee" in my left ear (that was my good ear).

At first I thought that it was the sound that I was usually hearing in my right ear and now it somehow moved to the other ear, but no!

There were 2 distinct sounds, 2 different tonalities, one in my left ear and the other in my right ear.

I panicked but somehow i managed to go to sleep again,only to wake up after another 2 hours of nightmares in the loudest "eeeeeee"that i have ever heard.

Just like a fleeting tinnitus, not as its maximum point but rather when it starts to disappear.

Only this time it didn't dissapear and I had a strange sensation of aural fullness.

I waited for a couple of minutes and ended up having the biggest panic attack ever.

I woke my husband up, he tried to help me but there wasn't much to be done.

I started crying and shaking.

It felt like everything was out of my control.

So I did something that I haven't done since February, I took a Xanax.

Thank god, after about a half an hour I fell asleep for 4 hours.

I woke up hearing only my base level tinnitus (the "eeeee" was still there but at an acceptable level) an being afraid to talk, to move, to breath...

Now, the tinnitus returned to my base level, but louder. I still hear that " eeeeee" but not as loud like last night.

So in the last days I got 2 more tones in my good ear, a sweeping sound and an intermittent " eeeee".

Add to that the bilateral hiss, the typewriter tinnitus, the alien insect and the super loud "eeeeee" that i had last night and you have the perfect recipe for a disaster. Not to mention the hyperacusis.

I don't have an explanation for these new tones. I didn't expose myself to loud sounds, I haven't been sick or something, I tried to eat healthy, and took my supplements.

At this point, I don't know what else should I do.

I guess the disease is progressing and there is nothing else I could do but accept it and go with the flow.

I can manage my old sounds. But not the new ones. Not coming like this, out of the blue, not with this intensity.

So sorry you're having such a bad week. Could it be that your new tinnitus sound migrates from the bad ear when lying down...?

I have something like that and it doesn't sound the same.

Have you tried sleeping sitting up in the couch on your back with both ears free of the pillow...? Put something beside the head both sides so the ears are free?

Could you be allergic to the puppy?

Is your nose good?

Yes, it feels hopeless / depressive when nothing can be done and it just becomes worse...

Hugs...

 

[aura]

So sorry you're having such a bad week. Could it be that your new tinnitus sound migrates from the bad ear when lying down...?

I have something like that and it doesn't sound the same.

Have you tried sleeping sitting up in the couch on your back with both ears free of the pillow...? Put something beside the head both sides so the ears are free?

Could you be allergic to the puppy?

Is your nose good?

Yes, it feels hopeless / depressive when nothing can be done and it just becomes worse...

Hugs...

We don't keep the puppy in the house nor see it on a daily basis.
I don't have any nasal discharge or allergy symptoms...

I am not depressive (yet) but extremely anxious when dealing with a new sound.
It's not just the fact that the sound is disturbing by itself, but also me being unable to figure out what caused it, what can I do to avoid it and make it disappear.

It's very frustrating when it's coming out of the blue.

For example, when you're going to a club/bar with loud music, you expect to have tinnitus the night following the event, maybe the day after, and after that it will gradually fade away.

But when you are being awakened by a fleeting tinnitus that doesnt't go away and doesn't have an explanation, your anxiety level reaches the sky.

 

[Exit]

We don't keep the puppy in the house nor see it on a daily basis.
I don't have any nasal discharge or allergy symptoms...

I am not depressive (yet) but extremely anxious when dealing with a new sound.
It's not just the fact that the sound is disturbing by itself, but also me being unable to figure out what caused it, what can I do to avoid it and make it disappear.

It's very frustrating when it's coming out of the blue.

For example, when you're going to a club/bar with loud music, you expect to have tinnitus the night following the event, maybe the day after, and after that it will gradually fade away.

But when you are being awakened by a fleeting tinnitus that doesnt't go away and doesn't have an explanation, your anxiety level reaches the sky.

Okay, not the cute puppy's fault at least. I got a new dual tone in my good ear in the beginning of summer and got extremely depressed.

After fighting this shit for over a year it suddenly decides to become constant multi tonal in the ear that didn't have anything the first 3 months.

It would be much easier to live and fight this if it got a little bit better every half year or so.

It would be very motivating.

My tones this far only comes lurking slowly. I would freak out too when overnight there's a new loud tone...

I think Xanax sounds like a good idea. Some people say it helps the volume temporarily...

Goodnight for lack of a better word.

(Try sleeping very tight).

 

[aot]

Have you had an MRI recently?

 

[Taw]

Hi @aura, just wanted to say that I went today to Dr. Lucian David and I was quite impressed with him, he really knows what he is talking about. He also performs the Round and Oval reinforcement surgery! He suggested it to me.

I did some tests (except the ones that you did not do either) and it was clear that I lost some inner hair cells from the left ear (the most painful one). Also I have some sinusitis and some strange middle ears or something. He suggested that all of that might contribute to my hyperacusis. I am not sure, the hyperacusis occurred when I was exposed to loud noise. He really spoke with me for 1 hour and explained a lot of ear anatomy and causes.

I will do 3 weeks of vapor inhalations with Dexa + Bixtonim + others and will see him again in 3 weeks.

Thanks for the tip!

 

[aura]

Hi @aura, just wanted to say that I went today to Dr. Lucian David and I was quite impressed with him, he really knows what he is talking about. He also performs the Round and Oval reinforcement surgery! He suggested it to me.

I did some tests (except the ones that you did not do either) and it was clear that I lost some inner hair cells from the left ear (the most painful one). Also I have some sinusitis and some strange middle ears or something. He suggested that all of that might contribute to my hyperacusis. I am not sure, the hyperacusis occurred when I was exposed to loud noise. He really spoke with me for 1 hour and explained a lot of ear anatomy and causes.

I will do 3 weeks of vapor inhalations with Dexa + Bixtonim + others and will see him again in 3 weeks.

Thanks for the tip!

I'm glad for you. I hope you will feel better with the treatment!

Keep us updated after the next visit!

I'm not in a good place now... just surviving these days.

Good luck!