After 13 Years of Habituation, Feeling Suicidal and Hopeless

Hi guys, it's Maggie.

Sorry for the sad post. I am living in complete fear and hopelessness most of the time. I have had tinnitus for 13 years and was coping well until I had a setback/spike causing hyperacusis which has only worsened in the past months due to stressful times.

I cannot handle the new volume and changes of my tinnitus which makes me so scared and seems to be more aggravated by the hyperacusis.

I also have hearing loss and cannot hear anything over my tinnitus even with my hearing aids on.

I have lost my ability to sleep and I don't think I can go through this again. I have fought for so long to keep things together but I don't recognize my tinnitus anymore which terrifies me and I find myself crying a lot. The worst is not being able to sleep with the new tinnitus - I cannot sleep, I think I am afraid to sleep now.

Life has no enjoyment and I sometimes just want to escape my own skin, but I can't! I keep thinking I am going to get out of this hole, but I just don't see how.

Thanks for listening!

Maggie

 

Maggie, I feel exactly the same as you.

I thought I had left tinnitus behind but one small vaccine jab has brought it all back 5 fold.

Time is the only thing that can heal us.

One day at a time.

 

Hi @Magwell.

It reads on your profile cause of tinnitus was Otosclerosis and noise. If the sudden increase in your tinnitus is related to Otosclerosis, then it's best to see an ENT doctor and hopefully, you can get some treatment as this is their area of expertise. You have also mentioned having a spike and experiencing hyperacusis. Whilst these symptoms may be related to Otosclerosis, if they are not, then they are probably caused by noise induced tinnitus.

I note that you have habituated to tinnitus for 13 years which is quite a long time. Putting the Otosclerosis aside for the moment. A common cause for tinnitus to increase after a long habituation period such as yours, is exposure to loud noise or regularly listening to audio through any type of headphones which includes earbuds, AirPods, headsets, noise cancelling or bone conduction headphones, even at low volumes.

I think it's unlikely the increase in your tinnitus is caused by both Otosclerosis and noise. I tend to think the increase is related to loud noise exposure or headphone use because you have mentioned hyperacusis. I could be wrong since I have no experience of Otosclerosis. Therefore, please see an ENT doctor so tests can be carried out on your ears and auditory system to diagnose the cause for the increase in tinnitus.

Please click on the links below and read my posts that relate to noise induced tinnitus after a long habituation period, as you might find them helpful.

Take care,
Michael

Will My Tinnitus Get Worse? | Tinnitus Talk Support Forum
Can I Habituate to Variable Tinnitus? | Tinnitus Talk Support Forum

 

You're not alone.

I'm having to rehabituate too.

We may soon have some good news re: Dr. Susan Shore's bimodal neuromodulation device.

Don't give up. I know it's exhausting, but your brain will adjust.

 

Thanks for your reply.

How long have you had tinnitus for?

I completely agree. Over the years I have taken many steps forward but many steps back...

Maggie

 

I am so sorry you are going through this hard time right now. Some spikes need more than a few months to settle, so please give it some time.

What have you tried in the last months to help you sleep?

There are some supplements like Magnesium (there are many others) and herbal teas that can be of some help.

You can also try hot baths before bed time, aroma therapy, a sound machine, exercise, or reading. If you have tried everything and still can't sleep, I think it is ok to take sleeping pills but be super careful and only take them once or twice a week until your body calms down and you start to sleep on your own.

I hope you start to feel better soon and you can catch some needed Zzzz's. I'll keep you in my prayers.

Once

 

Thanks for the advice, I have seen many ENTs and have had the surgery done in both ears which improved my hearing loss but I feel made my tinnitus worse. I had an exposure to a very low noise a few months back which was like white noise for about an hour (highway behind cemetery) and woke up with horrible roaring tinnitus which I was told was most likely due to hyperacusis?

But I was coping with these changes and sleeping until I went back to work and the stress was too much. I should have quit right away but pushed on through and now my tinnitus is so devastating that I truly cannot cope with it. I have had tinnitus that has continued to worsen usually by some event (noise exposure) over the years and I guess I just feel that it's just too loud, penetrating and intrusive now, it terrifies me all the time and I have knots in my stomach, which is why I cannot sleep! I have it my head by the way, not my ears.

I do not listen to music via headphones for it has always made my tinnitus louder, nor do I go anywhere where there is noise. I wear earmuffs to protect my hearing. I am starting to realize that I have had underlying hyperacusis all along. Even taking a shower is difficult for me because it increases my tinnitus...

 

Thanks so much for your kind words. I had to try sleeping pills a few weeks back b/c I was going on weeks without sleep. I also tried Mirtazapine twice but each time it spiked my tinnitus very bad. The second time I took it, I lay awake all night with screaming spikes, it was horrible. I do not do well with ADs, they have always spiked my tinnitus. I have resorted to using Lorazepam 1 mg every other night and just get no sleep on the other nights.

I was thinking of taking Melatonin but I am so scared right now, I could not handle any more spikes... I might try powdered Magnesium as it has been helpful in the past. It's just that when I go to sleep the noise is so unsettling, my brain will just not let me sleep. I feel I just don't know how to sleep. I fear I will have another sleepless night tonight and my tinnitus will be very bad tomorrow... very discouraging since it has taken me a long time to sleep with anything and whatever my tinnitus was doing...

 

Thanks guys for your responses.

I feel sometimes that habituation is a challenging word. Have we truly habituated if we are always having to adjust, cope and deal with spikes and changes in our tinnitus?

 

Habituation to tinnitus can mean different things to different people. I believe you have described it well, by learning to live our lives accepting and adjusting to the condition with all of its idiosyncrasies and not allowing it to impact too much on our mental and emotional wellbeing. Whenever possible, one should seek professional help in order for this to happen.

Michael

 

Hey Maggie,

You might get this one a lot but... hang in there. Focus on the positive things in life to draw out the negative. I can imagine life is treating you hard and unfair but you have managed to cope for 13 years. That proves how strong of a person you are. I send you all the virtual hugs in the world and remember you are not alone in this. Live to fight another day.

<3

 

When and what was your setback...?

Might get better if it’s not too long ago...

Hugs.

 

Welcome to the forum. You are never alone here as many of us have gone through similar experiences, including myself. Many members have already given you excellent advises above. I can only add my experiences to give you hope.

My ultra high pitched tinnitus hit over a decade ago suddenly overnight. Then severe hyperacusis soon followed. It was like a dentist drill with 10 times the pitch. Yes, like you, I couldn't sleep and had to take sleep pills plus playing masking sounds in order to get a few hours of sleep. I also had to take tranquilizers and antidepressants daily just to function. I lost appetite and lost weight and had trouble concentrating. Worse, I was overwhelmed by relentless anxiety and panic attacks due to prior history of suffering anxiety and panic disorders and PTSD. It was a nightmare experience. Yes dark thoughts flooded my tired and exhausted brain too.

I never thought I would recover and have my good life back. But never say never. I am still here standing and living my good life after getting support from kind forum members. I even wrote a success story "From Darkness to Light..." and then recently another success story for my SSHL struggle. I share some helpful strategies there. For brevity please check out the links below. Try to read up many success stories to calm your nerves which will help reduce the intensity of the tinnitus. Take care. God bless your recovery.

From Darkness to Light, How I Recovered from Tinnitus & Hyperacusis

 

One thing which seems to help me cope with my recent re-onset of tinnitus through COVID-19 vaccination is following a Zen exercise.

Part of the problem is our racing mind. In our agony we constantly rerun scenarios in our heads. What if I had done this? Or that? Why me? What kind of future do I have now? Should I end it all?

Last night when thoughts like that entered my head I just said ‘shush, move on.’ The thought stream did leave an empty but calm mind for a while. I could swear it calmed my tinnitus.

Just another possible antidote to suffering for some.

 

My sleep has improved with the use of tinnitus focused meditations.

Have you tried this?

Or even body focused/progressive muscle relaxation meditations?

 

Hi Maggie,

I think the key here is to get some good sleep.

If you have not tried benzos before, Diazepam can work marvels to get a good night's sleep.

I hope things improve soon for you!

 

I had (pulsatile) tinnitus off and on from 2014. It went away after 10 months. I then had ‘ordinary’ tinnitus (with a bit of pulsatile tinnitus latterly) from 2016 to about mid 2018. It more or less disappeared from then with a short noise induced spike for a week in 2020. Then peace and quiet (maybe a tiny sound in a quiet room) until I took the COVID-19 vaccine. Now back to square 1 with pulsatile tinnitus and tonal tinnitus.

The positive thing I take from this is that tinnitus can get better.

Always remember if people say to you that tinnitus is incurable so too is the common cold yet people do recover from it.

Good luck on your tinnitus journey!

 

@volsung37, I am so sorry that your tinnitus came back after the vaccine. I also am getting more pulsating tinnitus right now but I think it is due to lack of sleep. Since your returning tinnitus is medicine induced, there is a very good chance that it will go. Just continue to do what you have been doing and give it time. Big Hugs...

 

Thanks Juan,

Yes I am very familiar with the benzos and have been using Ativan 1 mg every other night to sleep. I have been using Ativan, Lorazepam for years PRN and was on it in the beginning. I don't think I would have survived in the beginning without it. But due to addiction I crossed over to Clonazepam and slowly weaned off.

Trouble is I have been using Lorazepam for so long that I fear I am building up a tolerance as I listen to my screaming tinnitus today which is the worst it has ever been.

I am now not sleeping well with it either even thought I have not taken it everyday. My family doctor will not write my any scripts for benzos and I cannot see my psychiatrist for another two weeks. I feel so stuck and trapped. I am so afraid to take anything new that will make my tinnitus worse... I fear I will go another night without sleep...

 

Hi Deb,

Yes, I have been trying to do mindfulness and I was doing much better my setback a few months ago. Trouble is, I find my noise so loud and disturbing now that I find mediation so difficult since all I hear is my tinnitus. That is why I cannot sleep either... I feel I just can't cope with this new volume but I know I have to try...

 

@billie48, thanks for your kind and inspirational story.

How long did you have the tinnitus & hyperacusis before you were able to habituate? Do you have any hearing loss?

The trouble is I have gone through all this before 13 years ago and although I accepted my tinnitus at some point I have never let go of the fear of it getting worse. Which over time it has continued to do so.

Have you had to habituate more than once?

I just feel so worn down, I don't know if I can do it again... my anxiety right now as I type is thru the roof!

 

I must say it took me longer than most people to habituate due to my prior conditions of anxiety and panic disorder plus PTSD. The first year was difficult. The 2nd year was better with many setbacks. The third year was more stable and I wrote my fist success story after the 3rd year. Everyone is different. But generally 6 to 18 months have been quoted by members as the normal time frame to get better. Yes I have hearing loss in the high frequency when the tinnitus first hit over a decade ago. But that was nothing compared to SSHL on my left good ear a year ago when the left ear lost all hearing. Then a new loud jet-engine like roaring tinnitus showed up after the SSHL plus severe hyperacusis again. Yes I have to learn habituation again for this new episode too. But after a year, I feel I can even ignore the jet-engine ringing. I just applied some helpful strategies I learned before and so the 2nd habituation is much easier than the first. So don't panic nor despair. Better days will come. Check out my 2nd success story on habituation. See if you find something helpful.

How to Habituate to SSHL and New Loud Tinnitus

 

@billie48,

Thanks again for such inspirational words. It must be hard to deal with SSHL. I have hearing loss too which has gotten worse. You are a very strong and courageous person. With my second current spike and setback I think I have gone further done the rabbit hole even worse than in the beginning because I have done all this before and the new sounds tinnitus levels terrify me with increased hyperacusis. It took me years to habituate as best as I could but I have never gotten over the fear of it getting worse because a lot of my exposures have caused spikes that were permanent.

I will try to work on mediation and relaxation although I have always found this hard to sit and listen to tinnitus especially at the level it is now. Any suggestions on sleeping? Still struggling with almost no sleep because I fear waking up to the new tinnitus and my anxiety just won't let me sleep.

I fear I will have to go back on benzos again because this fear and anxiety has me tied up in knots and if I don't get to sleeping properly again things will never get better.

How do you remain so calm...

 

@Michael Leigh, I have found your posts very helpful. I was wondering if you had any thoughts on why many of my noise exposures (i.e. room with a lot of people talking) have caused my spikes to be permanent and not go back down to a baseline? Do you think it's because of my otosclerosis and ear surgery?

Or do you think that these situations are more a result of increased hyperacusis which had gotten worse and perhaps was something that I should have had treatment for and dealt with in my earlier years? I never found regular sounds too much of a problem but my tinnitus would always get worse after the shower, running taps or listening to music even on the radio and low level? Or maybe it's a combination along with severe anxiety?

Would appreciate any insight that you may have since even my ENT does not seem to have a clue... Still feeling hopeless and struggling to make it through each day and sleepless night...

 

How are you getting on?

 

Hi @GregCA, I hope you're keeping well.

If I recall correctly, you have otosclerosis. If my memory is right, perhaps you could share some insights with @Magwell. It may help this sufferer out who is struggling.

Take care buddy,
Daniel

PS. I know this is a big ask for a forum member, thanks in advance even if you're stumped on advice.

 

Mags, hang in there (easier said than done)! Reading posts here has got to give a little comfort, no? It does for me.

I’m currently going through a tinnitus revival and it has not been fun! I got tinnitus back in March of 2020. It wasn’t due to loud noise and I think it had to do with stress (thanks pandemic).

The tinnitus was maddening. It seemed like it was constantly spiking. It would was a popping sound like popcorn - it would pop up the scale and down the scale. All day, everyday, and on a scale of loudness from 1-10, it was always a 6-10.

I eventually got used to it (not really) and the tinnitus started to subside on its own after 6 months and then disappeared completely by December of 2020.

I was tinnitus free all of 2021.

March 2022... I’ve been stressed since January and in March 2022, the tinnitus came back. It hasn’t been as maddening... but it’s there.

It will get better. Yours will get better.

 

Even at low volume bone conduction headsets can make tinnitus worse? I just bought some in hopes I could use them for masking as my tinnitus is brutal.

 

Hi Travis,

I am sorry to know that you are having a lot of difficultly with tinnitus at the moment. The advice that I give in this forum is not absolute and therefore does not apply to everyone because we are all different. It is based on my many years experience with tinnitus, corresponding with people affected by it and counselling people with tinnitus.

I understand what you are going through because tinnitus can be shockingly brutal. However, I believe anyone that has noise-induced tinnitus, risks making it worse if they listen to audio through any type of headphones including bone conduction even at low volume. I said risk, so this doesn't mean that you will be definitely affected.

Type headphones in the search box at the top of this page and read the posts. If you want to use bone conduction headphones, then go ahead, just be careful is my advice. By the way, tinnitus should not be masked or covered up with a sound so it cannot be heard. Please click on the link below and read my post. It is better to use low level sound enrichment, more information about this is in my post.

Have you been examined at ENT or referred to an audiologist for treatment? If you haven't, perhaps you should consider it.

All the best,
Michael

New to Tinnitus, What to Do? | Tinnitus Talk Support Forum

 

How are you now?

My tinnitus has become reactive and I have loudness hyperacusis. My tinnitus rings so loud because it reacts to everything and I cannot stand protecting inside my own home anymore. Life is rough. I hope you have gotten better somehow.