Struggling to Rehabituate — Could Use Some Support

[CompostInTraining]

Some of you may have read my other post about how tinnitus was no longer giving me anxiety and I wondered if that was the first step to rehabituate. Well turns out it hasn't stopped giving me anxiety.

I've had tinnitus for roughly 10 years but suddenly after a long period of extreme stress and a late night panic attack I have latched onto my tinnitus again and it's like I got it all over again.

in recent weeks I thought things were getting better. I was able to go for stretches of an hour or two without really noticing it much and when I couldn't help but hear it it wasn't making me feel the worst but yesterday and especially overnight I slid deep into despair, anxiety and the perception is back to how it was months ago.

I could really use any advice or support because I have nobody who understands this in my real life and it's extremely lonely.

has anyone had a spike that lasted over 4 months? Have you had to rehabituate after such a long time of it not bothering you? Is it normal to lose progress like this so sporadically?

I didn't sleep much at all last night and I'm feeling like this nightmare will never end. I want to have my life back and not give into this anymore but nothing seems to be working.

 

[aura]

I developed tinnitus in 2012 and it took me about 2 years to habituate.

After that, I had a normal life until March 2021 when, after a very stressful period, my tinnitus came back with a vengeance.

From March till now my tinnitus got worse, with no reason (I developed new tones, hyperacusis, my tinnitus got louder).

So yes, me and many others on the forum are the living proof that tinnitus can get worse with no apparent reason.

Stress, lack of sleep, hormonal changes, weather, loud sounds, certain foods (too much salt/sugar), and some drugs are related to tinnitus spikes.

But sometimes it's getting worse even though you're doing everything right.

If there's one thing I've learned from this experience it is that tinnitus is extremely unpredictable. But that means it can also get better. Even though I suffer very much and I feel that I'm living in a nightmare that never ends, I don't lose hope.
I'm also having some good days, I (somewhat) got used to it even if it's pretty loud and fluctuating and I still have hope that maybe one day I will habituate again.

 

[Vicki14]

@aura, great post, thank you for sharing. I absolutely understand this struggle and my tinnitus has gone to a level that I can't mask or sleep with now it's like a high pitched morse code screeching noise. My anxiety is the worst it's ever been and again I feel so beaten by this condition. I hope you are well x

 

[Wrfortiscue]

@aura, great post, thank you for sharing. I absolutely understand this struggle and my tinnitus has gone to a level that I can't mask or sleep with now it's like a high pitched morse code screeching noise. My anxiety is the worst it's ever been and again I feel so beaten by this condition. I hope you are well x

Mine is similar. Multiple tones, up and down volume and behavior non-stop. You get used to it and you can sleep eventually. Thing is it's just hammering away, and if you're not careful it will swallow you up. Accept it for now, let it do its thing. Allow yourself time to come to terms with it. Hopefully it will start reducing its presence.

 

[Vicki14]

@Wrfortiscue, thanks for your kind message

How did your new tones come about?

I absolutely agree with what you're saying... you need to fight hard not to let this swallow you up! I've been on this tinnitus journey now for 6 years and have definitely been a lots of lows with it It can be exhausting pulling yourself through these harder times and not knowing if and when things will improve. I think I'm struggling so much now as I just can't bear not having masking sounds on all of the time as the screeching noise is very triggering and probably just fearing that COVID-19 has potentially damaged my already fragile ears!

 

[Vicki14]

Some of you may have read my other post about how tinnitus was no longer giving me anxiety and I wondered if that was the first step to rehabituate. Well turns out it hasn't stopped giving me anxiety.

I've had tinnitus for roughly 10 years but suddenly after a long period of extreme stress and a late night panic attack I have latched onto my tinnitus again and it's like I got it all over again.

in recent weeks I thought things were getting better. I was able to go for stretches of an hour or two without really noticing it much and when I couldn't help but hear it it wasn't making me feel the worst but yesterday and especially overnight I slid deep into despair, anxiety and the perception is back to how it was months ago.

I could really use any advice or support because I have nobody who understands this in my real life and it's extremely lonely.

has anyone had a spike that lasted over 4 months? Have you had to rehabituate after such a long time of it not bothering you? Is it normal to lose progress like this so sporadically?

I didn't sleep much at all last night and I'm feeling like this nightmare will never end. I want to have my life back and not give into this anymore but nothing seems to be working.

I absolutely understand exactly how you feel as I too am at that point again (6 years with tinnitus). I always liken it to a game of snakes and ladders and know that we have slid down to the pits of despair AGAIN and hopefully we can climb out again. It's a VERY frustrating condition and one is love not to have.

I hope you too find the strength and hope to get through this x

 

[Wrfortiscue]

@Wrfortiscue, thanks for your kind message

How did your new tones come about?

I absolutely agree with what you're saying... you need to fight hard not to let this swallow you up! I've been on this tinnitus journey now for 6 years and have definitely been a lots of lows with it It can be exhausting pulling yourself through these harder times and not knowing if and when things will improve. I think I'm struggling so much now as I just can't bear not having masking sounds on all of the time as the screeching noise is very triggering and probably just fearing that COVID-19 has potentially damaged my already fragile ears!

Noise induced and the jab was the final blow. Yes it sucks and I haven't NOT gone one full day not thinking of my tinnitus. It's always there lol. I can find enjoyment and also have long periods if it's behaving, that I don't notice it.

 

[Vicki14]

Noise induced and the jab was the final blow. Yes it sucks and I haven't NOT gone one full day not thinking of my tinnitus. It's always there lol. I can find enjoyment and also have long periods if it's behaving, that I don't notice it.

Do you regret taking the jab? I haven't for that reason and wonder if by not doing so I've possibly made things worse? So many different options re this is very confusing to say the least!

 

[Wrfortiscue]

Do you regret taking the jab? I haven't for that reason and wonder if by not doing so I've possibly made things worse? So many different options re this is very confusing to say the least!

What's done is done lol. People are still getting COVID-19-induced tinnitus after being vaccinated too.

 

[Vicki14]

What's done is done lol. People are still getting COVID-19-induced tinnitus after being vaccinated too.

True! It just seems that there is no right or wrong thing to do and so many variables with this! Hope you're doing ok!

 

[Wrfortiscue]

True! It just seems that there is no right or wrong thing to do and so many variables with this! Hope you're doing ok!

My parents got 3 jabs and were fine. Nobody I know personally got worse after a shot. I know of such people only online.

 

[volsung37]

I took one jab.

One month later loud pulsatile tinnitus.

I have reported it to our Yellow Card system.

If I had been told there was ANY chance of tinnitus worsening I would not have taken the jab.

But they just rush you in, jab you and away you go.

Russian roulette with people's health.

 

[aura]

My parents got 3 jabs and were fine. Nobody I know personally got worse after a shot. I know of such people only online.

I know what you mean. I am the only one with problems after the vaccine (and by problems I mean the spike that lasted around 2 weeks after the third shot). My father, father-in-law and a friend of mine also have tinnitus but they didn't have any kind of spikes after 3 shots.

Literally no one I know in "real life" have had serious side effects after the vaccine (relatives, friends, my patients).

 

[tpj]

I took one jab.

One month later loud pulsatile tinnitus.

I have reported it to our Yellow Card system.

If I had been told there was ANY chance of tinnitus worsening I would not have taken the jab.

But they just rush you in, jab you and away you go.

Russian roulette with people's health.

I feel we're just collateral damage.

 

[volsung37]

The medical ethics of rolling out these vaccines is insane.

They are injecting chemicals with known side effects into healthy people who would almost certainly survive COVID-19 easily in a few days (especially the young).

In a way people's health is being put at risk for a societal goal - saving overstretched health systems.

This surely must conflict with the Hippocratic oath - to do no harm to the individual patient you are treating.

 

[Brian P]

The medical ethics of rolling out these vaccines is insane.

They are injecting chemicals with known side effects into healthy people who would almost certainly survive COVID-19 easily in a few days (especially the young).

In a way people's health is being put at risk for a societal goal - saving overstretched health systems.

This surely must conflict with the Hippocratic oath - to do no harm to the individual patient you are treating.

We are casualties that no one cares about.

 

[CompostInTraining]

As the title says I'm on month 5 after a stupid panic attack happened that saw me latching back onto the sound of my tinnitus.

At this point am I screwed? Has anyone come back from a spike/relapse this long?

If this is permanent, is it possible to rehabituate to tinnitus that can be heard over everything except the shower?

 

[DebInAustralia]

Some of you may have read my other post about how tinnitus was no longer giving me anxiety and I wondered if that was the first step to rehabituate. Well turns out it hasn't stopped giving me anxiety.

I've had tinnitus for roughly 10 years but suddenly after a long period of extreme stress and a late night panic attack I have latched onto my tinnitus again and it's like I got it all over again.

in recent weeks I thought things were getting better. I was able to go for stretches of an hour or two without really noticing it much and when I couldn't help but hear it it wasn't making me feel the worst but yesterday and especially overnight I slid deep into despair, anxiety and the perception is back to how it was months ago.

I could really use any advice or support because I have nobody who understands this in my real life and it's extremely lonely.

has anyone had a spike that lasted over 4 months? Have you had to rehabituate after such a long time of it not bothering you? Is it normal to lose progress like this so sporadically?

I didn't sleep much at all last night and I'm feeling like this nightmare will never end. I want to have my life back and not give into this anymore but nothing seems to be working.

I can totally relate to your post.

I met my friend in 2013.

A few relapses along the way.

Was in a very good place with my friend last year (in spite of having a lot of physical and emotional stressors). I largely didn't hear it, and when i did, it didn't bother me very much at all. I am not entirely sure if I had actually habituated or if I had taken/done something to make it better.

I developed a septic knee bursa late October 2021. I needed to have antibiotics. I was very nervous about this.

I was given one dose IV Cefazolin and a week's worth of oral Keflex. I have been told by multiple sources that this was not the cause. Within days, my tinnitus seemed more intrusive, and then the relapse just unfolded.

Here I am nearing the end of January, and still largely unhabituated to reaction and perception.

Due to the vaccine mandates here, I have been terminated from my usual job at the hospital as a midwife. Being busy at work was a coping mechanism.

I have managed to get work from home, for which I am about to start training today. However, the quietness of my home (masking/sound enrichment aggravates me) contrasted against what I am hearing is very challenging on my focusing and concentration.

 

[Forever hopeful]

My parents got 3 jabs and were fine. Nobody I know personally got worse after a shot. I know of such people only online.

I had not heard that. I thought vaccinated folks were getting less sick, thus less hearing loss and tinnitus.

My ENT said she is seeing less COVID-19 related tinnitus since folks started getting vaccinated.

 

[Wrfortiscue]

I had not heard that. I thought vaccinated folks were getting less sick, thus less hearing loss and tinnitus.

My ENT said she is seeing less COVID-19 related tinnitus since folks started getting vaccinated.

I'll be honest I've heard more of COVID-19 vaccine induced tinnitus vs COVID-19 infection induced tinnitus but maybe because it's amplified on here more lol.

 

[IntotheBlue03]

I can totally relate to your post.

I met my friend in 2013.

A few relapses along the way.

Was in a very good place with my friend last year (in spite of having a lot of physical and emotional stressors). I largely didn't hear it, and when i did, it didn't bother me very much at all. I am not entirely sure if I had actually habituated or if I had taken/done something to make it better.

I developed a septic knee bursa late October 2021. I needed to have antibiotics. I was very nervous about this.

I was given one dose IV Cefazolin and a week's worth of oral Keflex. I have been told by multiple sources that this was not the cause. Within days, my tinnitus seemed more intrusive, and then the relapse just unfolded.

Here I am nearing the end of January, and still largely unhabituated to reaction and perception.

Due to the vaccine mandates here, I have been terminated from my usual job at the hospital as a midwife. Being busy at work was a coping mechanism.

I have managed to get work from home, for which I am about to start training today. However, the quietness of my home (masking/sound enrichment aggravates me) contrasted against what I am hearing is very challenging on my focusing and concentration.

@DebInAustralia, forgive me if I've asked this question before but is your tinnitus reactive with any hyperacusis? I didn't realize masking and sound enrichment aggravates yours as well.

 

[DebInAustralia]

@DebInAustralia, forgive me if I've asked this question before but is your tinnitus reactive with any hyperacusis? I didn't realize masking and sound enrichment aggravates yours as well.

Nothing to forgive!

My tinnitus is reactive. I've tried masking with white noise etc and I'll spike...

Can't stand masking or having background noise on...

Definitely aggravates my tinnitus, my hyperacusis... and me

 

[IntotheBlue03]

Nothing to forgive!

My tinnitus is reactive. I've tried masking with white noise etc and I'll spike...

Can't stand masking or having background noise on...

Definitely aggravates my tinnitus, my hyperacusis... and me

Sorry to hear that. I've lost the ability to leave the house at this point. How do you do with regular external sounds?

 

[MindOverMatter]

For how long have you had your issues with hyperacusis and reactiveness @IntotheBlue03?

 

[IntotheBlue03]

For how long have you had your issues with hyperacusis and reactiveness @IntotheBlue03?

Hi @MindOverMatter,

From onset I've had the reactivity and hyperacusis. The tinnitus reactivity is what's torturous for me because it competes with all sounds, even my own voice so I've been in virtual silence and isolation for a month now. The hyperacusis is only sound sensitivity to random loud noises, no pain thankfully.

Really hoping you can tell me the reactivity gets better, being able to mask or have parts of my life back would be a godsend.

That doesn't seem to be the case the more I read reactivity posts across this forum though.

 

[Wrfortiscue]

Hi @MindOverMatter,

From onset I've had the reactivity and hyperacusis. The tinnitus reactivity is what's torturous for me because it competes with all sounds, even my own voice so I've been in virtual silence and isolation for a month now. The hyperacusis is only sound sensitivity to random loud noises, no pain thankfully.

Really hoping you can tell me the reactivity gets better, being able to mask or have parts of my life back would be a godsend.

That doesn't seem to be the case the more I read reactivity posts across this forum though.

The reactivity is very annoying for me. I can manage it but seriously, loud squealing just from a fan is just stupid. Like where is the healing lol. Most times I can ignore it, some days I'm just like stfu.

 

[MindOverMatter]

@IntotheBlue03, I have been where you are now, and know how difficult the reactiveness is.

This reactivity is, in ny opinion, closely connected to hyperacusis. Once the hyperacusis gets better, the reactiveness will ease.

That my personal experience with it.

But it just takes a lot of time.

Masking it is not an option, and will probably make it all worse. It took me 6-12 months to sort of adjust and find some sound therapy or background noise that was a little reactive as possible. That just flows in the background once you put it on. Soft pink noise for instance. Something that do no aggravate you.

Finding this sound may take some time... but once you find something you feel ok with, or less bothered with, you can slowly start desensitize. Low volume, just audible volume.

But, that being said, what's been of even more importance to me, and my journey so far, is not to isolate. That doesn't mean I did all the things I did before this happening, not at all. But find something that can lower your stress levels, shift your focus and so on. It will make you feel better. Such as talking a walk in more quiet surroundings with nature around you.

I did push through at one point because I did not feel like doing anything when did happened. Push through in the sense that did I want to sit home and feel bad and sorry about the situation, or instead try to do something that could give me some positives with light exercise and nature, and so forth.

When time passes, and you find a good balance, reactivity can ease up for you as well - and you will have more days with joy again. A slow, non-linear process, but a possible process.

I also did counselling, and still do after this 2nd trauma. Over 20 sessions (2 years) and counting, and that has been of good knowledge and support to me. It's always good to have support from someone that know and understand where you are.

There are no silver bullets to this necessarily, but there is HOPE.

You can do this, and you can get better!

 

[IntotheBlue03]

The reactivity is very annoying for me. I can manage it but seriously, loud squealing just from a fan is just stupid. Like where is the healing lol. Most times I can ignore it, some days I'm just like stfu.

Yes exactly! Does anyone know where this may come from? Despite "normal" audiograms up to 16 kHz I just found out I've been reading my OAEs wrong and there's some damage there. Is this that cochlear synaptopathy I keep reading about? Damaged or bent sensory hair cells that cause this reactivity?

 

[IntotheBlue03]

@IntotheBlue03, I have been where you are now, and know how difficult the reactiveness is.

This reactivity is, in ny opinion, closely connected to hyperacusis. Once the hyperacusis gets better, the reactiveness will ease.

That my personal experience with it.

But it just takes a lot of time.

Masking it is not an option, and will probably make it all worse. It took me 6-12 months to sort of adjust and find some sound therapy or background noise that was a little reactive as possible. That just flows in the background once you put it on. Soft pink noise for instance. Something that do no aggravate you.

Finding this sound may take some time... but once you find something you feel ok with, or less bothered with, you can slowly start desensitize. Low volume, just audible volume.

But, that being said, what's been of even more importance to me, and my journey so far, is not to isolate. That doesn't mean I did all the things I did before this happening, not at all. But find something that can lower your stress levels, shift your focus and so on. It will make you feel better. Such as talking a walk in more quiet surroundings with nature around you.

I did push through at one point because I did not feel like doing anything when did happened. Push through in the sense that did I want to sit home and feel bad and sorry about the situation, or instead try to do something that could give me some positives with light exercise and nature, and so forth.

When time passes, and you find a good balance, reactivity can ease up for you as well - and you will have more days with joy again. A slow, non-linear process, but a possible process.

I also did counselling, and still do after this 2nd trauma. Over 20 sessions (2 years) and counting, and that has been of good knowledge and support to me. It's always good to have support from someone that know and understand where you are.

There are no silver bullets to this necessarily, but there is HOPE.

You can do this, and you can get better!

Thanks @MindOverMatter.

Your insight is very reassuring, before this happened I did an overhaul on my health which is what makes this even more bizarre. I was walking outside 4-6 miles a day, lost 50 lbs over 6 months, and was targeting my microbiome with RNA sequencing for Targeted synbiotics and cellular nutritional supplements. In addition I had switched to an anti-inflammatory diet. I thought I was doing everything right.

I hope to get back to those things because as of right now I feel like reactive tinnitus has robbed me of all of them. I do finally feel more calm today and hope this can be the start of breaking that fight or fight cycle. Do you feel that your counseling was still successful as far as habituation goes despite the reactivity? I have signed up for TRT and CBT and am hoping the reactivity does not stand in the way. I should also probably clarify that it's "short term" reactivity in that the spikes only last as long as the increase in sounds around me so hopefully that is hyperacusis related.

I am on Grandaxin but feel that's a necessary evil at this point regardless of how it may affect neuroplasticity.

 

[Uklawyer]

Yes exactly! Does anyone know where this may come from? Despite "normal" audiograms up to 16 kHz I just found out I've been reading my OAEs wrong and there's some damage there. Is this that cochlear synaptopathy I keep reading about? Damaged or bent sensory hair cells that cause this reactivity?

@IntotheBlue03, I had an OAE test, and they found something in the 4 kHz-8 kHz range. My audiologist said that this this can just happen with age - i.e. losing outer hair cells, so it is not definitive of anything.

How did yours read?