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

[aura]

I wonder if the booster shot messed you up.

The COVID-19 vaccine did mess me up for a period of time, but I recovered.

After that, that damn trip... that really messed me up. Which is very strange, because nobody here seemed to experience such a long spike just by driving.

On the other hand, the fact that after taking Clonazepam and Mirtazapine I was so good for almost 2 days, should I take this as a good sign? Or was it a coincidence?

I'm tired trying to find out why do this spikes occur. It seems like all the bad things are happening to me.

I know 3 people with tinnitus (my father, my father-in-law and a friend). None of them had any kind of spikes after the COVID-19 vaccine (they all had 3 shots). I'm not even talking about the rest of the vaccinated people I know (literally everyone around me) who didn't have any kind of ear-related side effects.

I'm not saying that tinnitus can't be a side effect of the vaccine. I'm just saying that in real life no one I know has developed this kind of problem.

I've talked to a friend of mine, an ENT that lives in Belgium. She said that they are seeing post COVID-19 infection tinnitus and vertigo cases on a daily basis. Not so much post vaccine... not at all, actually.

Again, I'm not suggesting that post vaccine tinnitus doesn't exist. I just don't want another debate on this topic.

My dad, my father-in-law and my friend are driving, not protecting their ears and having normal lives. They don't have "spikes" and seem to have habituated very well.

It seems like I'm the special one

 

[Damocles]

I hate myself. I hate myself because I am not strong, because I can't overcome this, because I'm not able to take care for my daughter and my family anymore. I just sit in bed all day, crying, with the pillow on my head, in my own world.

I am scared that I won't be able to win this battle. I am not even scared for me, I am scared for my little girl. She is all I'm thinking about.

@aura, you need to stop giving yourself a hard time.

Stop worrying about your daughter, she loves you and you clearly love her, and that's all that matters regarding that.

Right now, you have to focus on you.

You're in survival mode at the moment, and you must focus on stabilising.

Put yourself first, and being a Mum to one side.

Once you're okay again you can be there for your family.

 

[aura]

@aura, you need to stop giving yourself a hard time.

Stop worrying about your daughter, she loves you and you clearly love her, and that's all that matters regarding that.

Right now, you have to focus on you.

You're in survival mode at the moment, and you must focus on stabilising.

Put yourself first, and being a Mum to one side.

Once you're okay again you can be there for your family.

View attachment 47911

Thank you, @Damocles, for your kind words. I think you are right. It's scary though when someone depends on you... But I guess that's how life is... unpredictable. You can't have everything under control.

 

[Ondine]

@aura, suffering and being scared doesn't make you a bad mother and never will. Even if you're in pain, I'm sure your daughter knows just how much you love her and how you're doing your best to get better and be there for her. That's all she needs... Don't feel guilty for not being there for her the way you'd want to, you're there nevertheless, and you're enough. I believe I recall an older post of yours where you said you explained her what was going on - that was an excellent call to help her understand that you need time to heal. I insist and I can't stress this enough, you still remain a good and loving mother despite the horrors of tinnitus and hyperacusis, and the day will come when you'll be able to take care of your family as you used to.

My mother suffered a life threatening sickess when I was 5-6 years old and I barely saw her all the time she was at the hospital, she couldn't take care of us but I never had the feeling she abandoned us or neglected us. I knew she was unwell and needed time to get better, and never once doubted she loved us. There's only so much we can do to protect children of the unfair events in life and the harshness of reality, but as long as love remains I am absolutely certain your daughter will never feel left behind.

I can only imagine how you feel having no children myself, but I know the depths of despair tinnitus can lead to, the guilt of not being able to function for those we love, the fear of not being able to function again. During the first months after onset I kept worsening and having new tones, increasing loudness, sound sensitivity, but it eventually, slowly subsided, even the crystal / wine glass humming and loud EEEE that broke me. I know no one can predict anything about tinnitus and we're all different, but I want to believe the same will happen for you and these rough weeks will soon ease up.

I know it's difficult, but try to be gentle and indulgent with yourself... You're doing your best given the situation, and that's enough. I'm sending hope and hugs, hang in there.

 

[kingsfan]

How are you doing today?

 

[Taw]

@aura, I understand your situation, I can stay in bed in the mornings without pain, but when I wake up from bed, the pain starts immediately. It's truly a nightmare, but don't blame yourself, because you did nothing wrong, it's not our fault that we get this horrible disease.

Yes, we have to accept this disease as my therapist said, but it's hard when the tinnitus or pain is at high levels.

For us, males, there is also the sensation that from alpha-males we became vegetables, we cannot even drive a nail with a hammer because of the noise. Or help our girls by crushing the nuts or cutting the meat bones with a small axe. This nightmare really gives us all a sense that we are hopeless and useless, because it's so crushing both mentally and physical.

You are not alone, I talk with many tinnitus and hyperacusis sufferers and most of them are worse in this period, I don't understand why. Some of them were better for years and now they are back to square 1.

I am sure that your daughter understands and supports you, because it's truly hard for her also to see you suffering like that.

I wish it would be just stress related, but the ENT did find some problems...

Are you talking about sinusitis or something else?

 

[aura]

How are you doing today?

Yesterday was a good day. In the morning, high pitched tinnitus woke me up. I managed to go back to sleep and today is pretty bad. I have no idea why.

 

[kingsfan]

Yesterday was a good day. In the morning, high pitched tinnitus woke me up. I managed to go back to sleep and today is pretty bad. I have no idea why.

It seems like a positive sign that you are having intermittent good days.

 

[aura]

Hello.

Some of you are familiar with my story.

Just a few minutes ago something scary happened to me.

This was the first time I experienced something like this.

I heard an extremely high pitch and loud sound just for a second.

It was so intrusive that I almost fainted. I saw some silver lights in front of my eyes and it almost felt like I was electrocuted. I have never heard a sound like that.

The fact that it could happen again scares me very much. It is not something you can live with.

Has anybody experienced something similar?

 

[DaveFromChicago]

To aura:

If that happened to me I would contact a Neurologist ASAP.

I am only an uncredentialed layperson, but the silver lights, the near-fainting episode and the sense of electrocution may mean that something other than tinnitus is going on.

But, by all means don't panic.

What if an MRI revealed that you had a minor stroke or epileptic seizure (and thank God that this appears to be a single occurrence and therefore does not presage any tissue damage) and this turned out to be the latent cause of your tinnitus?

What if such a diagnosis that resulted in medication or some sort of other treatment (such as electrical stimulation of the Vagus nerve) made sure that such an episode would not reoccur and thus also eliminated the tinnitus?

What if this episode actually led to finding the root cause of your tinnitus and therefore presented treatable options?

Believe me, stranger things have happened in the history of Medical Treatments.

 

[aura]

I am really sorry @aura.

I wish I could help you.

Me too, I have been awake almost all night, I just had a crying crisis and woke up all my family

A great hug

From what I've read, you've tried lots of drugs/supplements for sleeping.

What helped you the most?

I see from your medical report you had cesarean section in 2014. You mentioned formerly you first tinnitus disappeared after about 1-2 years.

May I ask you if this happened when you become pregnant?

The reason why I am asking this is because, after looking at and discarding many possible causes, I got to the point I think my tinnitus and many others of unknown cause are of autoimmune origin, Th1/Th2 imbalance. In my family both my father and daughter have autoimmune diseases of Th1 dominance. Pregnancy shift immune balance toward Th2.
So maybe we could get rid of tinnitus by having another baby!

It did got better in pregnancy. I didn't have any kind of ear-related symptoms in that period. But from what I remember I was already feeling better before getting pregnant.

 

[Juan]

Last night I went to bed and fell asleep. Then, a loud, intrusive "eeeeee" and waves of dizziness woke me up.

My guess: this could be categorised within the very broad boundaries of very light Meniere or "Meniere-related". Or endolymphatic hydrops... or some very light retro-cochlear activity involving the conduction of sound through the hearing nerve...

Many hearing issues over the years, in time, over long periods of time, can evolve towards some degree of Meniere... that's what I have learnt after talking to dozens of ENTs all these years...

I hope you recover soon.

 

[Juan]

I wish it would be just stress related, but the ENT did find some problems...

Which problems? Which tests did you get at the ENT?

 

[Juan]

I heard an extremely high pitch and loud sound just for a second.

It was so intrusive that I almost fainted. I saw some silver lights in front of my eyes and it almost felt like I was electrocuted. I have never heard a sound like that.

If you mean tinnitus, if you mean an internal sound, sometimes I hear a super loud sound for like a second and then my ears are more stable.

If you mean an external sound that produced this, it happened to me once with the intercom. Someone rang when I was close to that thing, and I had severe hyperacusis. I did feel electricity in my head, shooting to my brain... like a "frying" sensation. Pretty bad. It only happened once, that single time.

Silver lights etc... never happened to me.

 

[aura]

If you mean tinnitus, if you mean an internal sound, sometimes I hear a super loud sound for like a second and then my ears are more stable.

It was an internal sound. The loudest and sharpest tinnitus I've ever heard in my life. It was only for a second and it felt like my heart skipped a beat for a moment. Everything in my body stopped for a moment, it was a very strange and scary sensation.

It was ridiculously loud (30/10 or something), a sound that you can't tolerate more than a second or two.

My guess: this could be categorised within the very broad boundaries of very light Meniere or "Meniere-related". Or endolymphatic hydrops... or some very light retro-cochlear activity involving the conduction of sound through the hearing nerve...

Many hearing issues over the years, in time, over long periods of time, can evolve towards some degree of Meniere... that's what I have learnt after talking to dozens of ENTs all these years...

I hope you recover soon.

The strange part is that my tinnitus is mostly high pitched. From what I understand, in Meniere's the sounds are in the low range.

Also, I have waves of dizziness, but I don't feel that the room is spinning with me the way people suffering from Meniere's feel.

Nothing is spinning around me, I just have the sensation that I'm going to faint. It's just... classic dizziness, I suppose most of us have experienced it at least once.

Yes, i have been thinking about endolymphatic hydrops, but my simptoms are somehow different.

 

[Juan]

Nothing is spinning around me, I just have the sensation that I'm going to faint. It's just... classic dizziness, I suppose most of us have experienced it at least once.

I've got that light-headed sensation a few times... plus my fluctuating hearing, and tinnitus, and my history of severe hyperacusis etc etc... and lately doctors point to two directions:

- Some form of light Meniere. Apparently a lot of stuff related to hearing that cannot be precisely classified ends up in the "tailor's drawer" of "Meniere-ish"

- Endolymphatic hydrops. I think there's diet and diuretics for this... in my case, zero difference after trying that strategy.

 

[Wrfortiscue]

Hey @aura, not sure this helps but I woke up one time to the loudest highest buzzsaw noise I've ever experienced. It went away in 20 minutes but it sucked. Picture a circular saw going off near my ear it was extremely loud. Luckily it happened just one time from sleeping on my side neck bent weird.

Hang in there! Statistics are on your side and (crossing fingers) some of these treatments are coming out soon. Something has to give... Time, treatments, mind getting used to it, luck, a med that works for you... something.

 

[Maria Francesca]

From what I've read, you've tried lots of drugs/supplements for sleeping.

What helped you the most?

Hello,

Benzodiazepines were really effective at the beginning but I soon developed dependence and they made my tinnitus worse for months until I healed from the physical dependence, so definitely didn't help.

I now take Zolpidem once per week, max two, in order to avoid falling into dependence again.

Magnesium at high doses was helping a lot to relax before bed but the day after my symptoms were worse.

Same thing used to happen with Melatonin.

Now I am just taking Cinnamon and Valeriana but I still have poor sleep.

I have been diagnosed with early Sjögren so antidepressants are not recommended.

So really no solution for my sleep...

 

[Greg Sacramento]

@aura, yes - I have experienced all your mentions.

By guess is sudden and brief blood pressure change due to stress/anxiety. Often aided by standing quickly from a sitting position and twisting shoulders or rising quickly after bending over. Dehydration and/or overuse of Vitamin A - with the above could make silver lights appear more easily.

Dizziness and Sudden flash of lights: Common Related Medical Conditions (webmd.com)

https://symptomchecker.webmd.com/mu...symptomids=81|99|330|121&locations=66|66|3|66

 

[GeorgeLG]

@aura, I have not followed your posts for long so I don't know your history very well. I am sorry that you are suffering. Do you check your own blood pressure so that you can see if there is a significant change when you feel light headed? Same question with blood sugar? How about the chiropractor to check alignment, especially the neck and atlas?

I used to get panic attacks back in the 90's and Magnesium helped this as well as for sleep. My tinnitus spikes when I drive, musician's ear plugs reduces this but it always goes back down so I don't get concerned. Same with the shower.

Salt, caffeine, sugar, stress all spike mine as well. Reducing those helps. Staying busy helps. Just the right of background sounds helps. Relaxation helps. What has helped the most is changing my emotions about it. Not monitoring and quantifying my tinnitus but trying to accept it, explore how you feel about it, remind myself that it can't physically hurt me and deciding that it's less important. This probably isn't very "professional" but every once in a while I tell my tinnitus to F off, today you don't get to control me then I eat what I want and do what I want and celebrate a day with some fun. BTW, I just ate some ice cream and my ears are screaming but I don't give a s^&t, it was good and I enjoyed it. The spike will be gone in a few hours. Easier said than done some days but I have made progress here such that the impact on my life is less.

I used to have to control everything when I was younger. I got severe hypoglycemia and panic attacks when I was in my 30's. I obsessed about these things and made them much worse. I could not stand that something was broken and I could not control it, or so I thought. Once I started to change my emotional reactions to both of them they did not control my life any longer. After a while longer that both went away but I was OK long before that. I also had to go through Benzo withdrawal and that sucked but I got through that as well.

It's hard to meet your obligations or have fun when you don't feel well but I try to notice a better day and then be happy for that even if temporary and do something important or fun like with your child. In my case I call one of my kids when I am having a better day, its nice.

All the best,
George

 

[makeyourownluck]

Hey @aura, reading through your thread took me some time! It sounds like you've been put through the wringer. I hope it's the same as last time, and you reach habituation within 2 years.

Also, don't beat yourself up about not being the mum you wish you could be. I have really struggled with this myself, but nothing in life is perfect. I may not be able to run around and play with my little girl the way I want to, but she knows that I love her more that anything, and that's all that matters.

I am super impressed that you have managed to hold down such a demanding job. You put me to shame!

 

[Ela Stefan]

@aura, Dr. Georgescu is that much better compared with Dr. Voda? Everything about Dr. Voda is so true, if you can call her a doctor. She should have her doctor's license removed. Apart from exercises about vertigo, she knows nothing. And she got a new clinic!

Dr. Georgescu shoudn't have that title either. She does an elementary test and she told me I had pulsatile tinnitus. So horribly wrong. It was my MEM and she had no idea whatsoever. She was more concerned to talk with her resident and tell her lies. She failed to diagnose me. She didn't give even a vitamin.

 

[aura]

@aura, Dr. Georgescu is that much better compared with Dr. Voda? Everything about Dr. Voda is so true, if you can call her a doctor. She should have her doctor's license removed. Apart from exercises about vertigo, she knows nothing. And she got a new clinic!

Dr. Georgescu shoudn't have that title either. She does an elementary test and she told me I had pulsatile tinnitus. So horribly wrong. It was my MEM and she had no idea whatsoever. She was more concerned to talk with her resident and tell her lies. She failed to diagnose me. She didn't give even a vitamin.

Well, Dr. Georgescu told me that I had incipient otosclerosis 10 years ago. Twice. First time in June or July, and the second time after a couple of months, at my follow-up.

The diagnosis was incorrect, as many other doctors told me in the years that followed.

I don't know if that makes her a bad/superficial doctor though. To err is human I guess. She didn't treat me badly, she just didn't nail the diagnosis.


My experience with Dr. Vodă on the other hand was pretty bad. I was in great pain with tinnitus, hyperacusis and all I did was express my worries about the tests making it worse. She took it very personally though and her reaction was extreme.

I know everybody has good days and bad days and she really made an effort to see me that day even though her schedule was full.

But still, to treat a scared patient the way she treated me is just too much. It shows not only lack of knowledge (regarding the hyperacusis issue, not in general) but what's worse, lack of empathy.

Still, as you can see, not many doctors know about this disease so my expectations are pretty low now.

Dr. David Lucian was the only doctor who told me that I have hyperacusis from the beginning and seemed to understand how difficult it is to live with this condition. He also recommended me to avoid loud sounds in the future.

It's not much, but considering the lack of information and empathy regarding this issue you really get to the point when you appreciate even these small things.

 

[Daniel Lion]

Hi @aura, I just read your history, I had no idea... I'm an idiot (you know that).

Sending you hugs, and prayers for better days!

I hope everything settles down asap.

XXXXXXXXXXXXXXX
Daniel

 

[aura]

Hi @aura, I just read your history, I had no idea... I'm an idiot (you know that).

Sending you hugs, and prayers for better days!

I hope everything settles down asap.

XXXXXXXXXXXXXXX
Daniel

Thank you,@Daniel Lion .
I really have no idea why you said that you are an idiot