Spiralling Out of Control — Sudden Tinnitus Onset During a Period of High Stress

Hi everyone,

I am a 32yo/F and have been a reader here for 2 months before deciding to share my story.

I have moderate high frequency sensorineural hearing loss from birth. I have managed this unaided and it never was much of a problem since my other hearing is in the normal range.

I experienced a sudden onset of tinnitus in February after a period of very high stress. I look after my ears well and I have not had any recent noise exposure/ infection or cause I can attribute this to. Before this, I didn’t know tinnitus could be chronic. Reading it is incurable truly ruined my life.

After visiting ENT in March, my hearing has stayed at the exact level as before, as it has all my life (attached picture in grey under blue/ red compares to 2014 audiogram).

I requested blood tests to be done and everything looks normal except:
Serum TSH level 5.96 mU/L [0.35 - 5.5]
Serum vitamin B12 level 216.0 ng/L [211.0 - 911.0]. As far as doctors are concerned, they’re all fine.

I have done a lot of research during this time and am taking a multivitamin, B12, Z, Mg, omega3 (EPA+DHA), ACV with ‘the mother’. Not sure if any of that will help my tinnitus, but it might address some dietary deficiencies and help my overall health, at least...

I have tried so hard to stay positive and wish it will go away as there is nothing wrong with my ears and what’s wrong has been there all my life. Why this, why now. My tinnitus started on the left ear only, then moved to the other and centrally in my head, now it switches all the time. It used to be extremely unbearable 10/10, could hear it on top of everything possible. Around the ENT appt time, 3-4 weeks from onset, it was 3/10 but it has since got worse again. Right now I have high static in my head and a very high pitched sound mainly on my left ear. It has no wave shape anymore, meaning it is completely deafening as it doesn’t stop not even for fractions of a second and my head is constantly buzzing. I have eliminated stress and stayed at home recently (hello COVID-19!) which I thought would be key, but I can’t seem to get my brain that is extremely triggered to calm down.

The only thing that has helped is sound therapy and being in sound rich environments. I scored 100 on the tinnitus handicap inventory, which is considered catastrophic and was significant for anxiety and depression. ENT offered CBT only. Not sure I believe or care about therapy. I want the sound gone. It is in my head but I don’t control it. I did not suffer from any anxiety prior to this, nor do I want any medicine in my body for any of that crap.

I cry myself to sleep every night trying to get inspiration from the success stories in this forum. Tbh I don’t find them inspiring at all bar a few, no one has got cured, just learnt to live with it. I know myself and despite people saying you will habituate, everyone is like that at the start - I will not, I will drive myself to insanity. This has truly ruined my life, all my hard work for a better career, my relationships, everything. I am damned to hell.

 

Hi @screechesilence -- From my understanding, people with higher serum vitamin B12 levels than yours have benefitted enormously by raising them even higher. Just because your doctors say your B12 numbers are fine doesn't necessarily make it so. I'm happy to hear you're continuing to supplement with B12. However, some people do far better with certain forms of it, and not so much with others. The B12 hydroxo form seems to be the better form. -- Sorry to hear how bad things things are for you at this time, and hope things will improve for you soon!

 

Hello! Thank you so much for taking the time to read my long, boring and desperate post. I asked for these tests after reading about the deficiencies that could contribute to tinnitus myself, suspecting I would be low on B12 because I eat mainly a plant based diet. Doctors don’t know much or care. I live in the U.K. and have been taking this supplement:

https://www.amazon.co.uk/dp/B01N5RGV8U/ref=cm_sw_r_cp_api_i_bzcDEbBD4CAMQ

Perhaps I should try this, thank you for the advice!!

https://www.amazon.co.uk/dp/B01DW1A93Q/ref=cm_sw_r_cp_api_i_TFcDEb9AJA0VQ

 

Hey there, welcome to TT. I'm sorry you are suffering with this so much. You've come to the right place, though. Many of us have also had our lives devastated by this crap.

You are right about the CBT. I'm not saying don't try it (especially if it's covered), but that kind of therapy is meant to address psychological disteress, and tinnitus is very much physical.

I encourage you to take action with us and fill out this survey to help demand more research funding on treating tinnitus and cochlear disorders.
https://www.tinnitustalk.com/thread...-—-our-input-for-nidcds-strategic-plan.40065/

Also, join us in the research section in following the future regenerative medicine! Take a look at the drugs in clinical trials like FX-322 that have been a beacon of hope for us. Some of the others are preparing a beginners guide to regenerative medicine, so be on the lookout for that, too.
https://www.tinnitustalk.com/threads/frequency-therapeutics-—-hearing-loss-regeneration.18889/

Hang in there

 

In that case, I don't think you need to worry about it being permanent. When it is permanent, it is usually relentlessly at the same level. If it got to 3/10, it will eventually get there again. If you plot the volume vs time, it normally resembles a stock price chart. So retracements are normal. What matters is the monthly trend and the global lows. Don't worry about the daily trend. If it fades, it ought to continue to fade and often people get to the "can hear it only in quiet rooms" stage.
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

Thank you for the kind words Tweedleman. I will make sure to fill out the survey. I must say I am deeply embarrassed and angered by how little research is being done on this. I work in research myself and so much funding goes to completely pointless projects to feed some researchers egos.

I am excited by the news of FX-322. It would be a dream come true for many of us with hearing loss, even before the tinnitus. I hope that they make good progress with the clinical trials. It is maybe too soon to speak but will keep the faith. I tried to participate in the Regain clinical trials in the U.K. but they’re not recruiting for the foreseeable future. Let’s hope that some of these guys will save us all, sooner rather than later...

 

No problem, glad to have you here. Thank you for sharing your story, there is strength in numbers.

Also, I figured I would add that others here have reported good results supplementing with Nicotinamide Riboside (although very expensive) and Astaxanthin. I'm taking both, although it's too soon to report any improvements. Lion's Mane, NAC and Curcumin might also each be worth a shot.

 

When you say "relentlessly at same level" are you meaning the volume of the tinnitus is always the same for those with permanent tinnitus. Or are you meaning that the overall "character" of ones personal tinnitus stays the same over time? For example, the volume of my tinnitus is dramatically affected by the sounds/noise I am subjected to each day. For myself, it is the very quiet environment that suits me the best. When in a busy environment such as a room with a number of people talking, the volume of my tinnitus skyrockets. This "character" of my tinnitus never changes. BTW, I became 100% deaf in my right ear when the tinnitus began also. I have no doubt that my deafness is permanent.

 

Yes. I've known several people whose tinnitus volume never changed (and read posts by people like that), and I don't recall any of them eventually experiencing fading. So if someone's tinnitus doesn't fade at all during the first 4 months or so, it's a bad sign...

 

Okay, thnx. I was just curious about some clarification on that. Tinnitus is so unique to each individual. It would be amazing if there was some way to actually hear what another sufferer is experiencing. As it stands, it is only what each person can describe and is only relative to their own personal feelings and ability for tolerance. You might say the same thing about physical pain, but everybody out there has experienced physical pain to some degree so they are able to commiserate with one who describes the pain they are experiencing. However, with sever Tinnitus, if you don't have it,...it is very hard to understand what we are living with.

 

I always assumed that the natural thing to happen would be for tinnitus to gradually fade away and hopefully eventually disappear altogether. However it is unclear from the posts of people who successfully got rid of it (and not just habituated) that it was necessarily the case. In my case right now it is 100% a (whooshing) head sound (no static for the past 2 days!) but I can more or less determine if it’s central or to either side. My tinnitus started off on the left and this still remains the main affected area, but it moves all the time and despite reducing in intensity, it has never for a second just stopped. At this point I can’t imagine how it would EVER go away altogether. I think it just shifts sides or de-intensifies but it’s an unbeatable evil.

 

It’s easy for people to say don’t worry, or just invite it, we all understand how this makes things worse. All I can say is that 4 years into T, btw a constant 8/10 noise in my left ear, it DOES get better.

I was exactly the same as you, telling myself over and over that my life is ruined and I’ll NEVER get used to it. Well guess what? I did and so will you. Part of the problem is that way of thinking “I’ll never get used to it” please look at it like “This is annoying me, but it can’t harm me” focus on the things you enjoy from life and do them, don’t make up reasons not to die to this condition.

make sure you take the time to read, listen, talk about anything other than T and I promise you’ll go an hour without hearing it, than a day and then a week or if you’re lucky enough it’ll go completely.

Don’t give up hope, stress and your overall mental state is the volume button to T. You have the choice to turn it up or down, just take a step back and if you can dial it down and relax.

Wishing you all the best! we’ve all been scared at first, but you’re not alone

 

I tried both of those NR and Astax, and it spiked my tinnitus and hyperacusis...

 

Hello! Have you checked your jaw (TMJ), neck etc? Have you tried physiotherapy? Maybe there is a physical reason for your tinnitus.

If it is not due to loud sound, I think you have a better chance for recovery

 

@screechesilence have you gotten any better since March? Hope you are coping better now... best wishes.

 

My tinnitus started 6 months ago after a shower. I freaked out because of something that happened when I got out and I got a ringing on my left that never went away. It spread to the right and my head and it mainly is in my head now either centrally or shifting. I also get CLICKING sounds in my ears every so often. I think I have read some posts describing a similar phenomenon. I know that for some people 6 months might still be considered as 'early days' but from my perspective, my tinnitus is pretty settled now and it was ever changing and trying to establish a pattern for the first month only.

I started keeping a diary and I have good and bad days. It used to be every other day and the pattern would be reset by SLEEP only and would not vary much during the day, despite some people reporting theirs being worse at night or under stress - not here. If I am having a bad day it will be bad throughout and if it's good, likewise. EXCEPT, certain activities such as brushing my teeth using an electric toothbrush, drying my hair and especially longer, louder activities such as hoovering, help QUIETEN my tinnitus a lot and usually for the rest of the day. I used some sandpaper in the kitchen for a few minutes yesterday and enjoyed 'almost' silence for the rest of the day.

I have read people here that got their tinnitus due to noise induced damage, heck even due to the exact activities I described above and that these people are religious about protecting their ears. For me this isn't the case at all. (I would never advocate not protecting your ears, I have done so all my life, including never using head phones, but this religious over-protection is redundant in my case). I was told a while ago when I was desperate and posting questions (I still am! ) that once tinnitus reaches a certain LOW it will only get better or stay like that. And it does make sense... I wouldn't expect that if I broke my leg, one day I would suddenly be able to get up and run a marathon but the next day I would be wheelchair bound again. So my conclusion is - if my tinnitus had anything to do with my hearing loss in the high frequencies (that I have had all my life and coped just fine, without any tinnitus ever) or any noise trauma, it would always stay bad. The mere fact that it gets better, just to get worse again, suggests maybe something different...? Some people mention the word 'inflammation' a lot but I don't have a good understanding of this. Is this inflammation in the brain? Are my brain's gatekeepers malfunctioning and nothing is going to reset them? Can anything ever be done?

I think it is an absolute shame that not only do we not have a treatment etc, but no one insightful can shed some light on what might be going on, especially in scenarios like mine that NO single event like noise related trauma, ETD, neck injury or physical damage to the ear is the culprit. If I knew why my mainly head tinnitus reacts the way it does to the noise when I'm performing chores and the sleep reset pattern, I would be able to do something about it, maybe....

Is anyone else the same at all? I have read a fair few topics these past few months but nothing that matches what I am going through. Any insight would be greatly appreciated

 

Could be due to a viral infection that attacked either your auditory nerve or the hairs in your cochlea, or both. I know for some when their tinnitus is masked for a certain length of time the tinnitus afterwards is much lower. Maybe due to the brain not being able to focus on it so it lessens the intensity. But it usually always goes back up.

 

@screechesilence

Please check out Julian Cowen Hill on YouTube and touch base with him. Watch everything he has done.

 

Hello screechesilence... Sorry to hear about your onset of tinnitus. I just wanted to encourage you to keep fighting also. Don't give up on whatever it takes to get you help. This crap is a total nightmare and I'm a living witness of it's existence. It has made my life unbearable but I'm praying constantly for everyone here and everyone not here that has this horrible mess. God bless you and please hang on there.

 

Hi there,

I am similar to you in that I had a pre existing hearing loss prior to my onset, not totally sure if I was hearing tinnitus as I'd hear something almost inaudible with ear plugs in at night but quite liked it.

An ear infection and IV Cipro gave me what I'm trying to live with now.

I think you're experiencing residual inhibition after exposure to certain sounds. I can do this too, but the effects aren't as long lasting.

Is your tinnitus somatic?

 

It would seem ‘residual habituation’ is how that effect is described. It doesn’t last long enough and it is not a cure. However, I do wonder if a sound therapy generator connected to a hearing device that is worn all the time, would help potentially train the brain long term.

Sometimes when I chew hard on something, say bread, it makes me hear my tinnitus differently. But that’s only happened on very few occasions and I don’t think any movement of the neck or jaw does anything to diminish my tinnitus or play much of an effect on it. If someone would like to share an example of what exactly I ought to be doing to determine it is somatic, then I can give it another go.

I am stuck with not knowing what exactly caused it and what will ever provide any relief. I am going through a bad phase right now and it is disgusting even for things as severe as cancer, there is a cure or you die, whereas I am expected to live with this. It being hidden makes it harder, because no one knows or appreciates the hardship you deal with to try and live a normal life. It irritates me beyond belief and I still have to be focused 100% and do a good job at work or laugh with family like I’m normal. Well I’m not. My life is ruined forever.

 

Hi,

I came across post looking for information on tinnitus and hypothyroidism. I know nothing about tinnitus, but have had thyroid issues for 35 years, and been involved with thyroid support groups.

That TSH should be followed up in my view, since you have at least one symptom associated with hypothyroidism.

Interpretation of TSH is both simple and tricky. There is a tendency to let slightly raised symptomless results slide (under 10 is the rule of thumb), but the evidence is less clear cut. We know most of these are caused by autoimmune thyroid disease, even if you don't have symptoms you can be tested for the antibodies (TPO), and learn what to look out for should the condition progress.

As a minimum I'd expect a repeated test to show the out of range value was anomalous.

Also if you have antibodies to TPO we know they can reflect a need for additional Selenium in the diet, since the body needs this to process thyroid hormone. Taking Selenium, if appropriate, may reduce the autoantibodies. You can get dietary Selenium from certain nuts, including Brazil nuts. The dietary need is low, something like the equivalent of two Brazil nuts a day, and Selenium is toxic in higher quantities, so be guided by a doctor.

Tinnitus due to low thyroid (high TSH) usually improves with treatment. But that does require it to be the cause. My own tinnitus followed unusual swelling of my (remaining, it is complicated) thyroid, but my blood tests suggest I don't have low thyroid function (symptoms tend to disagree).

Low thyroid function is extremely common, especially in women.

 

Hello everyone (who might be reading),

My tinnitus did not go away or get much better after over a year and a half since sudden onset. I have just had my second dose of Pfizer (nothing unusual happened after the first) and as soon as I got injected, tinnitus became catastrophic and it has been that way for a week now. Even before this happened, I had lost all hope. I am in my early 30s, today we live during a pandemic and I got a jab, tomorrow it might be something else. Unless I kill myself to put and end to it all, how am I supposed to live the rest of my life like this? I wish tinnitus was an extreme/predominant side effect of the COVID-19 jab. Only then maybe they’d try to seriously look for a cure.

I don’t want to hear that maybe the spike will fade a month after the vaccine. I was told my tinnitus would quieten down after I got it out of the blue but it didn’t happen. I suffer so much. I just can’t go on like this. After changing what felt like a million jobs during the pandemic, I now have BUPA health insurance with my current employer. It seems good for nothing for my condition. The irony of being healthy otherwise! I’m so sick of feeling this way. Please help me, what do I do, please

 

I feel exactly the same way except I am off work on sick leave and largely confined to my house/room. I genuinely admire you so much for being able to work with your condition. Well done.

As for hope I had hope mine would fade from its onset in April 20 but instead it is much worse after Pfizer. The same as you.

I fight suicidal thoughts all day, and it is so long until a treatment. The only thing I think is that each day suffering will be in vain if I die voluntarily. 18 months in hell, maybe another 18 months and there is some treatment. Michigan device or XEN1101, Meniere's drug.

Reality is though that is optimistic, and there is a long winter here in Ireland ahead.

Best of luck. My thoughts are with you.

 

Hey @screechesilence. Sorry to hear you're struggling. I wish you well and hope things start to quieten down.

I know you don't want to hear this, but it's the most likely outcome. It may be terribly hard at this moment, but it's very unlikely to persist at this volume. In the meantime please be kind to yourself, do your best to focus on distracting activities and give it time. In a few months you're likely to be in a much better spot.

 

Thank you for your kind words. It is just that it was already hell as it was, and now I find myself wishing for that. Why doesn’t it go away? Why did I get this in the first place and have to suffer so much? I am glad some people keep motivated by a cure. I know in my lifetime that will never be the case. The success stories here depresses me more than anything. When I first joined I used to look forward to the day I would share my ‘happy ending’ there. I was so naive. Over time I realised there isn’t a happy ending for ANYone, just that people find different ways to cope or become more tolerant to it.

 

My recent blood results are as below. Should I be concerned about the CRP? Taking those B12 supplements etc paid off as better values than before.

Full blood count tinnitus
Total white blood count 8.7 10*9/L [3.9 - 10.2]
Red blood cell count 4.40 10*12/L [3.9 - 5.2]
Haemoglobin concentration 138 g/L [120.0 - 156.0]
Haematocrit 0.396 L/L [0.355 - 0.455]
Mean cell volume 90.4 fL [80.0 - 99.0]
Mean cell haemoglobin level 31.4 pg [27.0 - 33.5]
Red blood cell distribution width 13.0 % [11.0 - 16.0]
Platelet count - observation 279 10*9/L [150.0 - 370.0]
Plateletcrit 0.270
Mean platelet volume 9.7 fL
Platelet distribution width 52 %
Neutrophil count 5.44 10*9/L [1.5 - 7.7]
Lymphocyte count 2.64 10*9/L [1.1 - 4.5]
Monocyte count - observation 0.36 10*9/L [0.1 - 0.9]
Eosinophil count - observation 0.08 10*9/L [0.02 - 0.5]
Basophil count 0.03 10*9/L [0.0 - 0.2]

VITAMIN B12 tinnitus
Serum vitamin B12 level 456.0 ng/L [211.0 - 911.0]

CRP tinnitus
Serum C reactive protein level 18 mg/L [0.0 - 6.0]
Above high reference limit

TSH (USE FOR TFT) tinnitus
Serum TSH level 2.58 mU/L [0.35 - 5.5]

ESR tinnitus
Erythrocyte sedimentation rate 12 mm [1.0 - 12.0]

 

Hey hang in there. I was in a group that had many get tinnitus from the vax. Most of those faded and unfortunately some of us still linger. Mine was bad, then got pretty quiet, but I got sick and my son yelled near my ears and now I deal with shrill high frequency noises. Today wasn’t so bad though.

 

The COVID-19 poll seems to indicate a ton of people get better within 6 months.

 

What we don’t know is if the damage is temporary or permanent. Meaning inflammation vs. some lasting damage or trauma to our auditory system.