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

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!
Thank you. It worsened for me also, I cannot sleep on the side, which I always could, even in the painful hyperacusis days.

Then I had 2-3 good days and after the doctor's visit I am in pain again, maybe from the tests.

He wants to do also BERA and vEMP, forgot the exact names... And the audiologist was very careful with the noises, she tried to use the lowest noise possible.
 
Hey, @aura.

I haven't been on a lot lately, but I've been thinking about you a lot. Sorry you're going through this shit, and not seeing any progress at the moment.

Sounds to me like your hyperacusis is spiking. If there was no loud noise, it could be from all the cumulative noise of your work place, and/or just general life.

Or could be something structural. Didn't you mention a septum issue? And otosclerosis as well?

Get those checked. (NO MRIs).

Protect your ears even against everyday noise, like in a grocery store. (The only place I go without hearing protection is the bed room.)

See if you can extend your medical leave from work, as well.

:huganimation:

I know this is hard, but you can do it!

We all believe in you!
 
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.
For how long have you had the new sounds?

Can you remember what was your longest spike?

I don't even know if I should be calling it "spike" to the thing that I'm going through now.

Spike means up, top and down.

I'm just staying on the top now and I don't see the "down" road.

There are only 2 options when sitting on the top.

Either the top becomes the new normal, or you go up again...
 
For how long have you had the new sounds?

Can you remember what was your longest spike?

I don't even know if I should be calling it "spike" to the thing that I'm going through now.

Spike means up, top and down.

I'm just staying on the top now and I don't see the "down" road.

There are only 2 options when sitting on the top.

Either the top becomes the new normal, or you go up again...
There are actually three options, and the third is the most likely :)

Any new sounds have always gone away, for me. My longest spike was about 5 months.

There's a poll on here where 64 people said their longest spike lasted 'months', so it is not uncommon. Don't assume you are stuck with these new noises, just because they are taking a while to go.

My advice would be to get your ears checked with a doctor to make sure you don't have an infection, and then perhaps discuss taking something to help with your (very understandable) anxiety, as reducing anxiety will probably help end the spike quicker. You're a doctor yourself, so I'm sure you know the link between the two.

Other than that, try to stay calm and give it lots of time. You can do this.
 
Dr. Madalina Georgescu is a good doctor and an empathic one, unfortunately she does not work so much these days and I am on a waiting list to see her since March. I went to her many times for some old vertigo.

I totally agree about Dr. Ioana Voda experience, you just have to speak on her language and try to joke with her. I also had concerns about the tests and she said "if you want me to check you, you do as I say".

Beware of the sinusitis, because a lot of doctors will blame sinusitis for everything. I have some eyes problems, it's the sinusitis, I have stomach problems, it's the sinusitis, my leg hurts, they say it's the sinusitis. I have a long history with it.

I will try to see Dr. David Lucian, I see that he is at Regina Maria also, I have a subscription there.

Btw, where did you do the tests in your image? I see that it's a CT combined with some acoustic information. And what are the 100 dB tests? So I will stay away from them. :)

I will see 2 neurologists in September because the pain is sometimes unbearable and I think earmuffs are one of the causes (they press on my head), I heard that they are very good and very empathic: Dr. Cristea Floricel, Dr. Bogdan Rotaru.

Thank you for the tips, although I am not optimistic about this, a lot of researchers are studying this and I doubt that I will find a cure in our country.
Hello!

Please keep us updated with the neurological exams!
 
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.
Tinnitus can be absolutely brutal, so we all understand what you are going through. You have to do anything you can to reduce your anxiety as a priority, but this is far from easy. The more you obsess over your tinnitus the worse it will get on both a perveptive level, and a distress level. You have to engage in tasks that take your mind elsewhere, even if it's just something like tidying up the house. Now I know it doesn't seem possible to do anything, you'll feel like you want to just wallow (I didn't get out if bed for a week. It destroyed me completely, so I get it).

However, you have to try to muster the strength to reboot yourself. Get out into the fresh air and take a walk amongst nature for a while. Play chess. Learn an instrument, etc. Do anything you can to break the bond between your minds obsession with the noise to de-prioritise it's importance to you.
 
Spike means up, top and down.

I'm just staying on the top now and I don't see the "down" road.
Hey gorgeous girlie!

My last 'spike' lasted 6 months! It was horrifically loud. BUT it did eventually go down. Never back to baseline, but pretty much there.

It will be a long road before it settles again. Unfortunately time is what it takes. You gotta push through it. And you can push through it.

Be strong Sis.

<3
 
My last 'spike' lasted 6 months! It was horrifically loud. BUT it did eventually go down. Never back to baseline, but pretty much there.
Agreed!

After I got real bad in 2019, I thought I would never be better again.

But it's overall been getting quieter! I still have fluctuations and spikes of course, but sometimes (including this week) I get moments of almost total silence!
 
That is AMAZING news, @aot! So pleased for you. Remember these really quiet times if/when you are having a spike. It's proof that it can get there.
Yep!

And if there's hope for me, there's almost certainly hope for @aura.
 
Hi @aura. I went to the neurologist today, Dr. Cristea Floricel, Monza hospital.

I liked the fact that he knew about pain hyperacusis, because he already had 2 patients with this problem: one from Targoviste and a lady from Constanta. :)
He also read some studies that I wanted to show him but he already knew about some of them.

He pointed exactly to the spots I have the pain and he said that if I don't manage the pain it will worsen and I won't be able to wear earmuffs. Which is true, I also cannot put my face side on the pillow.

He gave me some painkiller cocktails for 3 months: Clonazepam, Gabaran and then a custom mix (I have to do it in the pharmacy) with caffeine + Diclofenac (which I cannot take) + Codeine + others.
 
Hello!

First of all I want to thank you for all your support.

I was going through a very difficult time, the fight is not over yet, probably never will, and you really helped me a lot.

Last time we talked my condition was getting worse super fast.

I was struggling with a new tone that appeared out ot the blue, after a very relaxing day, 3 weeks ago.

At first it was intermitent but after a period of time it became louder (I was hearing it daytime), hard to mask and permanent.

All of my older sounds aggravated, I had a loud hiss, a high pitched screeching insect sound in my right ear and other symptoms like ear fullness, ear aches and hyperacusis.

The new tone, that loud "eeeeee," became so intrusive that I couldn't sleep anymore.
After 3 almost sleepless nights I was at my lowest point ever and I realised that something needs to be done.

So I talked to my ENT and a psychiatrist.

They both recommended Clonazepam and Olanzapine.

I started the first night with 0.5 mg Clonazepam (the smallest dose I think).
The psychiatrist told me that if I don't go to sleep in 2 hours I should take another 0.5 mg.

That wasn't the case, because after an hour I started to feel somehow more relaxed and sleepy. I went to bed at midnight and woke up at 3.30 AM because of that very loud "eeeeee" sound. The good part is that I managed to fall back asleep in a few minutes till morning.

I woke up already feeling better and I continued to get better the day that followed.

I don't know if it was because of the Clonazepam (I suppose so) but that was the best day I had in the last year.

I can't even know how to describe you the feeling of being "normal".
My tinnitus returned to my old baseline, that loud "eeeeee" that tortured me non stop for the last 3 weeks was almost completely GONE, the hyperacusis got way better and I wasn't anxious anymore.

To be honest, I didn't expect something like this to happen. It felt like being in hell and suddenly going to heaven.

So the next night I took another 0.5 mg of Clonazepam.

The night that followed was even better than the previous one. I didn't hear the "eeeeee" sound AT ALL and slept like a baby till morning.

For me, this is a miracle. I didn't know that something like this was possible.

The second day the tinnitus and hyperacusis got a little louder comparing to the day before, but at a manageable level. I hear the morse code "eeee" sound only if I plug my ears, but it's a sound that I could leave with on a daily basis.

So my dilemma was: should I take Clonazepam 3 nights in a row?

I decided to give myself a chance and see what happens if I don't take it. I did manage to sleep, not so good like the night before, but for me this was a huge thing.

So here I am today, with tinnitus a little bit above my baseline, with a faint "eeeee" on the background, with the classic hissing, and an acceptable level of hyperacusis.

I'm feeling a lot better though because managed to sleep 3 nights in a row!!

So my thougts about this:

The good part:

If Clonazepam was the one that bring me back from hell, this is huge. It worked on every level: anxiety, insomnia, hyperacusis and basically make one intrusive tone dissapear almost completely (for a short period of time probably but still a huge thing).

I have been taking other kind of benzodiazepines before but they didn't have that effect.

The bad part:

Benzodiazepines are highly addictive and they are not a long term solution. To be honest, I am a little scared, even if I only took 2 pills.

I am expecting, once it gets out of the system completely (and it takes some time, because of the long half life) for my syptoms to get back.

The thing that scares me the most is that the "eeeee" sound will be louder once the "magic" is over.

I feel like Cinderella, waiting for the midnight to come and all her beautiful clothes disappear and to return to her suffering...

So I'm trying my best to avoid this.

I wake up early in the morning even if I'm tired and try go to sleep early.

Oh, and big news, I got rid of the walking frame and I can move now without help. It's hard, I'm limping, but it's a step forward.

I will talk to my psychiatrist and search for a long time solution. For me, Clonazepam works only as a safety net, and, as tempting as it would be to use it on a daily basis, this would only make things worse in the long term.

So this was my success story. My 2 day success story. That's what I've been asking God for, just some time to breathe. And I got it.

It was the most beautiful thing that happened to me in the last year. I wish every one of you got to feel like I felt theese days... you deserve it so much!

I'll keep you updated.

I know what to expect for the next days. Winter is coming. I just hope that it will be more like a cold autumn...

IMAG9760~2.jpg


The picture above is a little something that I cooked for my family on the day that I felt better. :)

And another thing, I managed to get an online appointment with Dr. Dirk De Ridder.
 
That's awesome aura! :)

Happy for you!

This means a part of your tinnitus can be related to tensed muscles and you being an anxious pretty little bird :D

So perhaps some sort of physiotherapy to the neck area can help you! I'll volunteer to give you a massage :p
 
Bună!
I feel like Cinderella
See, I knew you were a Disney princess!
So this was my success story. My 2 day success story. That's what I've been asking God for, just some time to breathe. And I got it.
Seriously, well done @aura.

I think the step you took will really help with your return to... well... not normality... but the insanity that was normal for you about a month ago.

If the Clonazepam can make this tone less intrusive, then you have nothing to fear: maybe the tone will return, maybe it won't. Maybe it will return, but then in a couple of weeks time, disappear for good. No one can say. But what's important is that as you have assessed, you now have a massive safety net for if you begin running low on sleep. I'm confident that with this in mind, even if the tone does return, you can habituate to it, knowing that.

You're doing great @aura.

Look forward to your full recovery, because honestly the forum isn't the same without you.
 
Hi @aura, it is always hard to advise for meds but here are some words about my own experience. I took a similar amount of benzo for a long time, well over 6 months when I was first struck with tinnitus. Once I got my emotions under control it was not that hard to stop taking it. I would say keeping the dose low is essential for it to be therapeutic. Carving for more is a bad sign. Also you should already know if you have any addiction problems in the past. For me a benzo was essential to get 7-8 hours sleep. The healing all starts there. Just sleeping a few hours a night might be worse than the benzos. What you could consider for insomnia is Zopiclone. I took it on and off for many years. Long term use of benos messes around with GABA so you want to stop at some point to not prevent the healing process (but so alcohol messes up with GABA as well).

There are alternatives to benzos but they are all quite demanding so I would wait until you fell stronger. It also depends how motivated you are.

I think you already know of all of this:

1. Training, walks outside for about an hour. Try to catch the sunlight.
2. CBT/Meditation
3. Cold shower (start slow) - it will take a couple of weeks to even get to the coldest but the feeling afterwards is amazing. It will lower inflammation and boost immune system.
4. Try Keto and fasting. It will increase your own natural GABA and it is also anti-inflammatory and some say it boosts healing. I find some of the Keto threads here to be very inspiring.
5. Make sure you do not have any micro infections in your mouth, it could be in your tooth pockets. Use dental floss. Also check all muscles in jaw, cheek neck for tensions and inflammation.

Just my thoughts.
 
Good news @aura :rockingbanana:, I hope your next days can be the same or better than these last two days.

Regarding benzodiazepines, I took 10 mg of Diazepam for a month and a half, and I didn't have any dependence; my psychiatrist even told me to do it without tapering.

Now that's a beautiful table of food :rolleyes: I haven't had breakfast yet but I would accept to eat those beautiful toasts.
 
a lady from Constanta.
So I'm not the only one in Constanţa.
He gave me some painkiller cocktails for 3 months: Clonazepam, Gabaran
I guess after 3 months you are supposed to taper them off?

Did he tell you if these meds are only useful as long as you take them? What happens after you stop taking them?

From what I've read, you took Clonazepam before, but only for a short period of time and with good results.
 
Good to hear, I hope the effects stay after you discontinue Clonazepam! I haven't tried it yet myself, I'm toughing it out with simple Valerian root.
 
So I'm not the only one in Constanţa.

I guess after 3 months you are supposed to taper them off?

Did he tell you if these meds are only useful as long as you take them? What happens after you stop taking them?

From what I've read, you took Clonazepam before, but only for a short period of time and with good results.
After 3 months I should visit him again.

Clonazepam works great for most people, I know at least 3 people who improved greatly using it.

I talked to many doctors about Benzos and everyone says that people with epilepsy take them for their whole lives and I have nothing to worry about as long as I withdraw them with a doctor (a neurologist or psychiatrist), not by myself.

The longest time I've taken Benzos is 15 days and I had no problems.

Now the neurologist wants me to take them for 3 months, otherwise he said that they do not work properly.

I am also taking Duloxetine, which did miracles for the pain today but the nausea is horrible, I almost vomited all day.

Talk to a doctor and maybe try to take it for a few weeks and see how it goes. Try lower doses first, 0.25 mg morning + 0.25 mg evening.

The food looks very nice. :)

By the way, I have never heard of Dr. Dirk De Ridder. Can he help us in some way?

Thanks.
 
Good news @aura :rockingbanana:, I hope your next days can be the same or better than these last two days.

Regarding benzodiazepines, I took 10 mg of Diazepam for a month and a half, and I didn't have any dependence; my psychiatrist even told me to do it without tapering.

Now that's a beautiful table of food :rolleyes: I haven't had breakfast yet but I would accept to eat those beautiful toasts.
Well if you'll ever come here, this will be your breakfast! :)
 
The healing all starts there. Just sleeping a few hours a night might be worse than the benzos.
I'm with you on this one.

Sleeping, or better said, lack of sleep is my biggest problem.

I'm basically an owl, I'm going to bed much too late and this isn't good, but I'm working on it.
Cold shower (start slow) - it will take a couple of weeks to even get to the coldest but the feeling afterwards is amazing. It will lower inflammation and boost immune system.
Interesting. I've been reading about this but never gave it a try. Maybe I should!
 
Seriously, well done @aura.

I think the step you took will really help with your return to... well... not normality... but the insanity that was normal for you about a month ago.
Thanks, but I wouldn't open the bottle of champagne yet... In a couple of days I'll be popping Clonazepam like Skittles :)

Joke aside, I'm sooo grateful for this break.
Knowing that there is still a small part of normality left in me gives me a lot of joy and hope!
Look forward to your full recovery, because honestly the forum isn't the same without you.
<3
 
That's awesome aura! :)

Happy for you!

This means a part of your tinnitus can be related to tensed muscles and you being an anxious pretty little bird :D

So perhaps some sort of physiotherapy to the neck area can help you! I'll volunteer to give you a massage :p
Thanks, @Exit!

A little bird whispered in my good ear that you're into bunnies, so... this one is for you :)

IMAG9633~2.jpg
 

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