COVID-19 Booster Caused Hearing Loss, Tinnitus, Middle Ear Myoclonus

[Mins]

This is my first post. I am struggling.

I had an aggressive reaction to my COVID-19 booster in December. It led to a number of severe body wide problems culminating in:

• Sudden hearing loss (both ears, some hearing has returned but sadly not back to what it was)
• Tinnitus (both ears, severe multiple electrical frequencies)
• Hyperacusis (both ears, worse in left)

And I have been diagnosed with:

• Middle Ear Myoclonus (left ear)
• Eustachian Tube Dysfunction (both ears)
• Retracted Ear Drums (both ears)

I have many other debilitating symptoms including:

• Pulling twisting tightening spasm sensations/spasms, in both ears, that pull so tight my hearing reduces further and the electrical tinnitus frequencies becomes intense squeal
• Ear fullness
• Movement sensations inside ears, like ear drum moving inwards and outwards
• Abnormal suction inside both ears
• Vacuum feeling in ears/throat, feels like I'm trying to swallow same thing over and over, I feel I am 35,000 feet on an aircraft
• Crackling, amplified in ears, each time I swallow, 3/4 crackles each ear each time
• Numbness pulling sensations on and around ears

I also suffer from Trigeminal Neuralgia (many years) which is normally quite stable but which relapsed just prior to my sudden hearing loss/tinnitus.

I am just so desperate right now. The noise is horrendous. There are just too many symptoms to deal with. I have no quality of life. I did not have any infections or congestion and I don't suffer from allergies. I was prescribed an Otovent balloon and nasal spray to help with the retracted ear drums but this caused more problems.

I've seen an ENT, and a neurologist.

This all appears to be nerve related.

It would be helpful to know:

• If anyone has recently experienced any of the above difficulties following COVID-19 vaccine?
• What type of consultant you saw?
• If anyone has recently had surgery/success for Middle Ear Myoclonus?

Thank you in advance.

 

[makeyourownluck]

Sorry, I don't have experience with any of the vaccines. I've been too afraid to get any because of stories like this one.

You can search the forum for information related to the COVID-19 vaccine or COVID-19 itself. Seems they are both a risk, rock > hard place.

I think @Padraigh Griffin has had that surgery recently. Maybe he could offer some advice.

 

[emmalee]

Here are two discussions that may interest you.

Omicron Infection — Did It Make Your Tinnitus Worse? Post Your Experience

Will You Get Vaccinated for Coronavirus (COVID-19)? Can It Make Tinnitus or Hyperacusis Worse?

 

[Juan]

This is my first post. I am struggling.

I had an aggressive reaction to my COVID-19 booster in December. It led to a number of severe body wide problems culminating in:

• Sudden hearing loss (both ears, some hearing has returned but sadly not back to what it was)
• Tinnitus (both ears, severe multiple electrical frequencies)
• Hyperacusis (both ears, worse in left)

And I have been diagnosed with:

• Middle Ear Myoclonus (left ear)
• Eustachian Tube Dysfunction (both ears)
• Retracted Ear Drums (both ears)

I have many other debilitating symptoms including:

• Pulling twisting tightening spasm sensations/spasms, in both ears, that pull so tight my hearing reduces further and the electrical tinnitus frequencies becomes intense squeal
• Ear fullness
• Movement sensations inside ears, like ear drum moving inwards and outwards
• Abnormal suction inside both ears
• Vacuum feeling in ears/throat, feels like I'm trying to swallow same thing over and over, I feel I am 35,000 feet on an aircraft
• Crackling, amplified in ears, each time I swallow, 3/4 crackles each ear each time
• Numbness pulling sensations on and around ears

I also suffer from Trigeminal Neuralgia (many years) which is normally quite stable but which relapsed just prior to my sudden hearing loss/tinnitus.

I am just so desperate right now. The noise is horrendous. There are just too many symptoms to deal with. I have no quality of life. I did not have any infections or congestion and I don't suffer from allergies. I was prescribed an Otovent balloon and nasal spray to help with the retracted ear drums but this caused more problems.

I've seen an ENT, and a neurologist.

This all appears to be nerve related.

It would be helpful to know:

• If anyone has recently experienced any of the above difficulties following COVID-19 vaccine?
• What type of consultant you saw?
• If anyone has recently had surgery/success for Middle Ear Myoclonus?

Thank you in advance.

I hope you recover soon.

That's why I did not get vaccinated...

 

[Mins]

Thank you makeyourownluck, emmalee, and Juan for replying I really appreciate it. And thank you for links.

I am absolutely terrified and any hope I had of this fixing has gone.

I wish with all my heart I had not had the booster, I just want to turn the clock back.

I did not react well after my first vaccine AstraZeneca, but slowly improved after 5 days. Second AstraZeneca was mild. But for the booster it was a different vaccine, Pfizer, and initially the reaction was like first AstraZeneca but more severe and instead of improving just continued to deteriorate.

I keep thinking I am going to wake up from this nightmare. But here I am again at 2.30 am in the morning with all this noise in my ears. The 'normal' tinnitus is bad enough but the middle ear myoclonus is so loud it's distressing, it's reverberating on my ear drum and skull, it not possible to ignore it.

And because my Eustachian tubes aren't working, every time I swallow cracking amplifies on my ear drums as well. And the 'vacuum' feeling between my ears and throat feels like I'm trying to swallow the same thing over and over.

There does not seem to be a way out of this. And as it appears to be a autoimmune response affecting nerves any thing that may be done could cause more problems.

Thank you again for replying.

 

[Leila]

I'm sorry to hear you ended up with so many horrible side-effects because of you vaccination. I hope your symptoms will subside a little with a little more time.

 

[Mins]

I'm sorry to hear you ended up with so many horrible side-effects because of you vaccination. I hope your symptoms will subside a little with a little more time.

Thank you.

I'm struggling to cope with the nightmare I've found myself in. I have so much anxiety tearing through me because I can't do anything to 'fix' it all. There's too many things wrong, and too much noise. I don't understand how I can have all these things going on with my ears all at the same time. It's like something is driving it all.

Has anyone had a similar thing happen and any of it get better? How long did it take?

I don't want any of it. I just want my body to reset itself back to what is was.
But if the myoclonus would go, and the Eustachian tubes and ear drums would fix that would help me find some strength to deal with the rest.

I had so many plans to make this year special for my elderly mum after 250 miles of separation during lockdowns, including buying her tickets for shows. But I can't even travel in a car because of what it does to my sensitivity and tinnitus let alone endure the noise of a show.

I'm so afraid because I can't get to my mum, I'm imagining all kinds of scenarios and me not being there with her.

All I want to do is to hold the people I love and have some quality of life with them. Instead I am locked away in a room with my noise and other awful symptoms just wishing the days away. This is not right.

I'm so sorry for anyone else who's suffering like this.

 

[emmalee]

Thank you makeyourownluck, emmalee, and Juan for replying I really appreciate it. And thank you for links.

I am absolutely terrified and any hope I had of this fixing has gone.

I wish with all my heart I had not had the booster, I just want to turn the clock back.

I did not react well after my first vaccine AstraZeneca, but slowly improved after 5 days. Second AstraZeneca was mild. But for the booster it was a different vaccine, Pfizer, and initially the reaction was like first AstraZeneca but more severe and instead of improving just continued to deteriorate.

I keep thinking I am going to wake up from this nightmare. But here I am again at 2.30 am in the morning with all this noise in my ears. The 'normal' tinnitus is bad enough but the middle ear myoclonus is so loud it's distressing, it's reverberating on my ear drum and skull, it not possible to ignore it.

And because my Eustachian tubes aren't working, every time I swallow cracking amplifies on my ear drums as well. And the 'vacuum' feeling between my ears and throat feels like I'm trying to swallow the same thing over and over.

There does not seem to be a way out of this. And as it appears to be a autoimmune response affecting nerves any thing that may be done could cause more problems.

Thank you again for replying.

You are welcome @Mins My heart goes out to you as I completely understand your struggle. Your story does resonate with me, but on a different level, perhaps. I already had tinnitus when I received my Pfizer booster, the shot did not cause it. What it did do is elevate and change the tone of my tinnitus to a level that was alarming.

Please try to hang on to some hope with this situation, time does play a factor in many instances. This is tough advice to accept and seems almost impossible to comprehend, I know.

I do not want to make this about me and my experience, but I want you to know that my spike, after the booster, has started to calm down. I thought I was in for the long haul and had given up any hope that it could ever get better, yet it has. I am not back to my normal level and tone, but there has been progress. It appears to be all about time, as I mentioned earlier.

Coming here to this forum is a very good idea, in that you can talk about how you are coping with all of this with people who truly understand your despair.

Like you, if I could turn back the clock, I would never have gotten the booster, but this is not possible. What I have done, and this is a very personal decision on my part and not advice to you or anyone else, is made the decision to forgo a fourth shot. No more vaccines for me.

I am wondering if your doctor has suggested a medication to help you cope with the anxiety you are dealing with at this time? Sometimes it is suggested, in the short term, to help when one is feeling desperate.

~ emma

 

[Mins]

You are welcome @Mins My heart goes out to you as I completely understand your struggle. Your story does resonate with me, but on a different level, perhaps. I already had tinnitus when I received my Pfizer booster, the shot did not cause it. What it did do is elevate and change the tone of my tinnitus to a level that was alarming.

Please try to hang on to some hope with this situation, time does play a factor in many instances. This is tough advice to accept and seems almost impossible to comprehend, I know.

I do not want to make this about me and my experience, but I want you to know that my spike, after the booster, has started to calm down. I thought I was in for the long haul and had given up any hope that it could ever get better, yet it has. I am not back to my normal level and tone, but there has been progress. It appears to be all about time, as I mentioned earlier.

Coming here to this forum is a very good idea, in that you can talk about how you are coping with all of this with people who truly understand your despair.

Like you, if I could turn back the clock, I would never have gotten the booster, but this is not possible. What I have done, and this is a very personal decision on my part and not advice to you or anyone else, is made the decision to forgo a fourth shot. No more vaccines for me.

I am wondering if your doctor has suggested a medication to help you cope with the anxiety you are dealing with at this time? Sometimes it is suggested, in the short term, to help when one is feeling desperate.

~ emma

Thank you for taking time to reply, especially as you are struggling with your own difficulties. No more vaccines for me either.

How long did it take for things to improve a little for you? Was your hearing affected and has that improved?

I am taking Propranolol for anxiety, but feel no benefit, I've never felt so scared.

Drifting off to sleep and escaping it all can feel such a relief, but then as soon as I feel myself wakening up I'm hit with horrid panic.

The myoclonus tinnitus in my left ear is an inhumane noise to endure. My eardrum was really vibrating badly through night too. It really went up a louder level when I cleaned my teeth; I never had to think of these simple things before this happened. Even staying away from sound makes no difference once it decides to go full throttle.

My other tinnitus (firey electrical pitch frequencies in both ears) increases to squealing pitch. The volume goes up when I hear sound, I think it's because of the hyperacusis problem.

I also have crackling tinnitus amplified on my eardrum when I swallow, I think it's because my Eustachian tubes are still not working and my eardrums are retracted. It just adds to the desperation of all this.

There are too many symptoms, noises and sensations to deal with, it's been months now and I'm just so exhausted. It's mental torture. I don't know how to keep going, every day gets harder.

 

[emmalee]

Thank you for taking time to reply, especially as you are struggling with your own difficulties. No more vaccines for me either.

How long did it take for things to improve a little for you? Was your hearing affected and has that improved?

I am taking Propranolol for anxiety, but feel no benefit, I've never felt so scared.

Drifting off to sleep and escaping it all can feel such a relief, but then as soon as I feel myself wakening up I'm hit with horrid panic.

The myoclonus tinnitus in my left ear is an inhumane noise to endure. My eardrum was really vibrating badly through night too. It really went up a louder level when I cleaned my teeth; I never had to think of these simple things before this happened. Even staying away from sound makes no difference once it decides to go full throttle.

My other tinnitus (firey electrical pitch frequencies in both ears) increases to squealing pitch. The volume goes up when I hear sound, I think it's because of the hyperacusis problem.

I also have crackling tinnitus amplified on my eardrum when I swallow, I think it's because my Eustachian tubes are still not working and my eardrums are retracted. It just adds to the desperation of all this.

There are too many symptoms, noises and sensations to deal with, it's been months now and I'm just so exhausted. It's mental torture. I don't know how to keep going, every day gets harder.

You are welcome.

It took almost three months for me to notice an improvement, post booster. I am still far from my original baseline, yet I remain hopeful, still. If this is as good as it gets, then I will have no choice but to accept it and start the process of coping all over again.

When talking about acceptance it can sound like one just chooses to accept the noise and move on with their lives, easily. Nothing can be further from the truth, it is a very difficult practice, yet so very necessary. What else is there but to accept this and try to live your best life. There is no cure in my future, in my very personal opinion. This morning I am back to my high volume, after feeling hopeful for the past several days. Tinnitus doesn't play fair, instead it taunts us.

I absolutely believe that the Pfizer booster vaccination is what has caused this spike.

It is no wonder you are mentally exhausted and feel tortured, @Mins. I wish with all of my heart that you could find some help and subsequent relief from all of this. If the Propranolol isn't giving you some relief, then perhaps trying another medication is an option. No one wants to resort to medications, but in extreme situations, they have their place, again in my personal opinion.

Please do keep coming here and posting, it can help, even if only in some small way. No one in our real, everyday lives could ever begin to understand what we live with, even though they want to.

 

[Mins]

You are welcome.

It took almost three months for me to notice an improvement, post booster. I am still far from my original baseline, yet I remain hopeful, still. If this is as good as it gets, then I will have no choice but to accept it and start the process of coping all over again.

When talking about acceptance it can sound like one just chooses to accept the noise and move on with their lives, easily. Nothing can be further from the truth, it is a very difficult practice, yet so very necessary. What else is there but to accept this and try to live your best life. There is no cure in my future, in my very personal opinion. This morning I am back to my high volume, after feeling hopeful for the past several days. Tinnitus doesn't play fair, instead it taunts us.

I absolutely believe that the Pfizer booster vaccination is what has caused this spike.

It is no wonder you are mentally exhausted and feel tortured, @Mins. I wish with all of my heart that you could find some help and subsequent relief from all of this. If the Propranolol isn't giving you some relief, then perhaps trying another medication is an option. No one wants to resort to medications, but in extreme situations, they have their place, again in my personal opinion.

Please do keep coming here and posting, it can help, even if only in some small way. No one in our real, everyday lives could ever begin to understand what we live with, even though they want to.

I feel sad that you are also suffering because of the vaccine, and for everyone else who has been adversely affected by it in anyway.

Suffering lasting effects following the virus is widely understood and accepted by others. Whereas suffering effects following the vaccine is somehow more difficult for others to grasp.

I kept my self safe and avoided catching the virus. Like others I adhered to the guidance, couldn't see loved ones due to distance, and safety was further reinforced due to work from home. Groceries delivered, literally hunkered down and safe, very safe.

I did not derive any benefit from the Pfizer booster as I became unwell, it has served no purpose other than to take my quality of life at the very time restrictions in the UK were easing. I am still in lockdown with all this noise and other horrid symptoms.

My daughter and I were vaccinated together. We were in really good spirits, and whilst sitting in the recovery area afterwards we took photos of each other and sent them to my elderly mum (250 miles away). Ironically in the photograph beside me is vaccine cubicle number 13, and in the text to my mum I point out the cubicle and the sign saying 'lucky 13'.

The photos of us are a painful reminder of life before this. Even though I'm wearing a mask my eyes are smiley, bright and full of life, enjoying the moment with my daughter, and now all that life and brightness has all gone. And other than appointments, I've been nowhere.

It's 6.00am and unable to find a way to sleep through this noise again, I am so tired. The vibrating myoclonus is on full throttle on my ear drum and my other tinnitus with its various firey hiss, eeeee and squeal frequencies is excruciatingly loud. The loudest and worst orchestra of collective sound imaginable.

Add to that the amplified crackling (both ears) every time I swallow.

I honestly do not know how you are supposed to live with this.

I'm so sorry this post has turned into despair, I'm just so tired and the noise is more than I can cope with.

 

[emmalee]

I honestly do not know how you are supposed to live with this.

I'm so sorry this post has turned into despair, I'm just so tired and the noise is more than I can cope with.

No apology is needed, @Mins. This forum is here for all of us and without it, I don't know that I would have made it through my early days with tinnitus. The support, encouragement and empathy were badly needed, and I received all three.

Like you, I didn't know how I was, or anyone was, supposed to live with this. Your case is severe and for this I am heartbroken for you. There are some other members here who suffer terribly, just as you are. One of them is @Jazzer. Please look at his profile and read his "Story." This may help you to keep moving forward, even when the thought of doing so seems unrealistic.

https://www.tinnitustalk.com/threads/dave’s-tinnitus-story.33554/

I am sorry if I sound like a broken record, but please keep posting here. It is a very positive thing that you can do for yourself.

 

[Mins]

No apology is needed, @Mins. This forum is here for all of us and without it, I don't know that I would have made it through my early days with tinnitus. The support, encouragement and empathy were badly needed, and I received all three.

Like you, I didn't know how I was, or anyone was, supposed to live with this. Your case is severe and for this I am heartbroken for you. There are some other members here who suffer terribly, just as you are. One of them is @Jazzer. Please look at his profile and read his "Story." This may help you to keep moving forward, even when the thought of doing so seems unrealistic.

https://www.tinnitustalk.com/threads/dave’s-tinnitus-story.33554/

I am sorry if I sound like a broken record, but please keep posting here. It is a very positive thing that you can do for yourself.

Thank you for you kindness and encouragement.

I suffered a lot of severe body symptoms following the vaccine. I was already exhausted by the time it progressed to my ears, which happened suddenly. I'm still struggling to believe the nightmare this has become.

I struggle that initial reassurance about my situation lost me valuable time. The hope I had in the beginning has now turned to despair. The reality that this is unlikely to change is hard to come to terms with.

I fear every single day with all these horrid symptoms and noises, and I have no quality of life. I struggle with the impact of this on my daughter, and the quality time doing simple things we can no longer do. It has stolen her life too.

I have sound sensitivity, and the tinnitus especially the middle ear myoclonus reacts to it. I can't watch TV, listen to music, be around household equipment, go in the car somewhere, go shopping, or to a coffee shop. Things we have waited so long to do and couldn't because of COVID-19/lockdown restrictions. Being outdoors impacts my ears. Simple conversation triggers the volume of the myoclonus, eating food, brushing my teeth etc. I dread ever needing the dentist. And I desperately need to see my elderly mum 250 miles away (and this is breaking my heart).

I am sinking into a dark place, and my thoughts are not those of the person I was. They are also at odds with my faith. And if things should go wrong what would happen.

Thank you for the link to Dave's tinnitus story.

I watched (and cried) Dave's tinnitus story. I can relate to this lovely gentleman's story, and mourning the loss of his precious talent and gift stolen from him in such a cruel way. For my life was affected in a very 'similar' way many years ago. Not the same gift/talent but still a lifelong music/performing arts gift/talent. This is long before the current situation I have found myself in with my ears. That is why my current situation feels so brutal.

Thank you emmalee, especially as you are suffering too.

 

[linearb]

I had substantial spikes after all three Pfizer shots, in the worst case it took me 3-4 weeks to get back to baseline.

I still plan on getting another booster when offered, because the number of people who get hearing loss or tinnitus from COVID-19 appears to be substantially higher than the vaccines (2-3 orders of magnitude), and we know the protection from the vaccines appears to be fairly short lived, and COVID-19 is everywhere.

Real sorry this happened to you, @Mins - that's such an extreme reaction, and so suddenly after the shot, I would personally be suspicious they might have spiked a nerve and injected directly into that by mistake. This can happen with almost any shot given, and if you give enough people shots some number of them are going to end up in the wrong place. Local nerve damage (shoulder pain) is a much more common manifestation, but people who already have compromised hearing may be at risk of more audiological issues.

Not much you can do except the usual with Magnesium/etc and trying to get good rest.

 

[emmalee]

And I desperately need to see my elderly mum 250 miles away (and this is breaking my heart).

I am sinking into a dark place, and my thoughts are not those of the person I was. They are also at odds with my faith. And if things should go wrong what would happen.

Thank you for the link to Dave's tinnitus story.

I watched (and cried) Dave's tinnitus story. I can relate to this lovely gentleman's story, and mourning the loss of his precious talent and gift stolen from him in such a cruel way. For my life was affected in a very 'similar' way many years ago. Not the same gift/talent but still a lifelong music/performing arts gift/talent. This is long before the current situation I have found myself in with my ears. That is why my current situation feels so brutal.

Thank you emmalee, especially as you are suffering too.

I am wondering if your Mum is too elderly or even too ill, to maybe visit you at your home? The reason I ask is because it may give you some much needed emotional relief. Seeing your dear Mum and spending some time with her could only do you both some good, your sweet daughter, also. I know this may too difficult for her to manage, it was just a thought, one that hopefully could be arranged.

You are welcome, @Jazzer made the video so it would be of help to others who suffer from extreme tinnitus.

You mention a performing arts/gift talent, may I ask what the story is behind this? I will completely understand if your are not up to this request, please know that I will not be at all offended if this is the case.

Thank you for your concern, @Mins, I really appreciate it. My tinnitus volume is still far higher than it it ever was, before my booster, although it will fluctuate from time to time. I have had one day where I felt hopeful, this was sorely needed. My hope is that days such as that will begin to happen more often.

 

[emmalee]

I had substantial spikes after all three Pfizer shots, in the worst case it took me 3-4 weeks to get back to baseline.

I still plan on getting another booster when offered, because the number of people who get hearing loss or tinnitus from COVID-19 appears to be substantially higher than the vaccines (2-3 orders of magnitude), and we know the protection from the vaccines appears to be fairly short lived, and COVID-19 is everywhere.

Hello, @linearb.

You are so fortunate to have your substantial spikes actually go back to baseline. It is hopeful to hear this, thank you for sharing.

For me, unfortunately, this is not the case. All three vaccinations were Pfizer. The first two brought about a sore injection site and an all over unwell feeling, typical symptoms.

The booster was a different matter all together. Within hours of the shot, all heck broke loose. I have never experienced my tinnitus at a level that I am experiencing right now, almost four months post booster. Different tone, loudness that is more than I can tolerate most days, and a definite loss of hearing.

No more vaccinations for me, personally. I do however, appreciate your views and input, as always.

~emma

 

[linearb]

Hello, @linearb.

You are so fortunate to have your substantial spikes actually go back to baseline. It is hopeful to hear this, thank you for sharing.

I am sorry to hear you've had a more difficult experience, but, I believe mine to be "quite typical". I have a half dozen friends with tinnitus who have been vaccinated, and about half to 2/3 of us had short to mid term spikes following the shots, which went back to baseline over a period of time. I also read a very long thread on Reddit at one point, and while there were certainly some horror stories, the vast majority of people reported either no changes at all or short term changes only.

I know 4 people in my personal life (plus me) who have varying degrees of long term problems post COVID-19 infection; I don't, personally, know anyone who's had long term problems from the vaccines, and I know vastly more people who have been jabbed than who have had COVID-19.

It's all so unpredictable and hard to gauge; certainly, COVID-19 itself is well known to be pretty catastrophic for hearing, this impact is worse in unvaccinated people, and my read of the VAERS and clinical data is that COVID-19 itself causes or worsens tinnitus at about 1000x the rate that the vaccines do.

That's not much consolation to people who have had severe adverse reactions, though -- any more than the existence of the vaccines is much consolation to people (like me) who have permanent issues from wildtype infections that occurred before vaxxes were available. (Fortunately, my long COVID-19 issues are not audiological. Yet, anyway).

Note that I am only reiterating my experience because I believe it's fairly normal and people don't need to be more worried about the vaxxes than COVID-19 itself when the data points hard the other way

I am not disputing that anyone here may have problems from the vaccines; drugs do weird shit, so do viruses.

 

[emmalee]

It's all so unpredictable and hard to gauge; certainly, COVID-19 itself is well known to be pretty catastrophic for hearing, this impact is worse in unvaccinated people, and my read of the VAERS and clinical data is that COVID-19 itself causes or worsens tinnitus at about 1000x the rate that the vaccines do.

Yes, I have read much the same information and I agree that the impact for hearing loss is much worse in unvaccinated people. Yet, here I am, triple vaccinated and in the throws of the worse tinnitus spike I have ever experienced, and hearing loss added to the mix. This is due to the booster, 100%.

This is the only reason that I will forgo any more vaccinations for further variants of COVID-19. Why on earth would I, or anyone else who has been through the same experience, chance it? There is no sensibility in that thinking whatsoever.

This is, of course, a very personal choice and not one that I would try to push on another. When it comes to tinnitus we are all so very unique, yet so very similar. If someone were to ask me what I think, I would not hesitate to tell them this, exactly. As tinnitus sufferers, we owe it to each other to lay all of our cards on the table for all to see. It is the right thing to do.

It is always nice chatting with you @linearb, thanks for your reply, theses discussions are necessary, we can never stop learning from one another.

 

[linearb]

Yeah @emmalee, clearly if I'd had your experience I'd be a lot more dubious about further shots. As it is... well, I had three, it wasn't fun and spiked my ringing, and in all cases came back to normal in a reasonable timeframe, so, sure, I will do #4 if we get there.

It's all BS though; we have a profound lack of top down guidance, and a lot of the basic data about the vaccines has turned out to be wrong. The immunity doesn't last long, and parts of the spike protein ARE written back into the DNA of the person who got the vaccine -- Intracellular Reverse Transcription of Pfizer BioNTech COVID-19 mRNA Vaccine BNT162b2 In Vitro in Human Liver Cell Line -- this is new research but it fundamentally undermines one of the basic safety claims about the vaxxes, that they had no retroviral action. They do.

Of course, if vaccine spike protein rewrites your DNA, then the actual virus probably does all that and then some since it's a vastly more complex set of genetic code than the simple naked spike protein used in the vaccines.

The spike protein is inherently cardiotoxic, appears to be retroviral, and I kind of think of it as "microdosing a bioweapon". On the other hand, actual COVID-19 looks like a great way to mess up your hearing and brain and life expectancy all at once, plus I believe I already had it once and have lung damage as a result, so...
...
...
...
2019 was okay, 2020 was bad, and everything yet to come will be more unstable and worse? Probably, smoke em if ya got em.

 

[Mins]

Real sorry this happened to you, @Mins - that's such an extreme reaction, and so suddenly after the shot, I would personally be suspicious they might have spiked a nerve and injected directly into that by mistake. This can happen with almost any shot given, and if you give enough people shots some number of them are going to end up in the wrong place. Local nerve damage (shoulder pain) is a much more common manifestation, but people who already have compromised hearing may be at risk of more audiological issues.

Not much you can do except the usual with Magnesium/etc and trying to get good rest.

Thank you linearb.

I didn't have compromised hearing before the Pfizer booster. (I did have ear infections a long time ago as a child).

I had AstraZeneca for first vaccine which I reacted to about 9 hours later. My 2nd vaccine (also AstraZeneca) was very mild, so I felt confident having the booster, however was a different vaccine, Pfizer.

What I can say is that 2nd AstraZeneca vaccine was administered by an experienced practice nurse who took a great deal of time injecting it very slowly in to my arm. The first AstraZeneca vaccine and Pfizer booster were given at a vaccination centre and it was over in seconds.

Another difference was the Pfizer vaccine was the only one that gave me a stiff/sore arm. This happened very quickly whilst still waiting in the recovery area. I didn't develop a sore arm at any time following the AstraZeneca vaccines.

My reaction following the Pfizer vaccine has been life changing for me, I was a completely different person. I have a lot of horrid symptoms and noises and at this time no quality of life. I was told one of the types of tinnitus I have is rare, the noise is inhumane and distressing and I am really struggling to keep going every single day.

I feel sad for everyone who is suffering like this, it is mental torture.

 

[Forever hopeful]

Thank you.

I'm struggling to cope with the nightmare I've found myself in. I have so much anxiety tearing through me because I can't do anything to 'fix' it all. There's too many things wrong, and too much noise. I don't understand how I can have all these things going on with my ears all at the same time. It's like something is driving it all.

Has anyone had a similar thing happen and any of it get better? How long did it take?

I don't want any of it. I just want my body to reset itself back to what is was.
But if the myoclonus would go, and the Eustachian tubes and ear drums would fix that would help me find some strength to deal with the rest.

I had so many plans to make this year special for my elderly mum after 250 miles of separation during lockdowns, including buying her tickets for shows. But I can't even travel in a car because of what it does to my sensitivity and tinnitus let alone endure the noise of a show.

I'm so afraid because I can't get to my mum, I'm imagining all kinds of scenarios and me not being there with her.

All I want to do is to hold the people I love and have some quality of life with them. Instead I am locked away in a room with my noise and other awful symptoms just wishing the days away. This is not right.

I'm so sorry for anyone else who's suffering like this.

So sorry to hear you are going through all this.

Apart from the hearing loss, which it sounds like they are attributing to the COVID-19 booster, what is causing the other issues (myoclonus, ETD, retracted ear drums) and are you being treated?

 

[Mins]

So sorry to hear you are going through all this.

Apart from the hearing loss, which it sounds like they are attributing to the COVID-19 booster, what is causing the other issues (myoclonus, ETD, retracted ear drums) and are you being treated?

I'm sorry I don't know the answer.

The loss in hearing and tinnitus happened quickly. When my ears were examined, the eardrums were retracted and I was diagnosed with Eustachian tube dysfunction. It all happened at the same time. I didn't have an infection or congestion and I don't suffer from allergies. I was prescribed a balloon and spray. This just caused more problems. I was told the eardrums and Eustachian tubes would resolve, but they haven't. I had a nasoendoscopy recently and things are the same. I have a strong negative pressure reading in both ears.

I get strong twisting, tightening sensations in my ears pulling tightly inwards; when this happens my eardrums retract further, there is a strong suction feeling, it's really uncomfortable (similar but worse than high altitude in an aircraft). The vacuum feeling between my ears and throat increases making it really hard to swallow. I feel like I'm trying to swallow the same thing over and over. The tubes seem to close really tight blocking the air. My tinnitus increases to a squealing pitch and my hearing dips further.

I experience a numb pressure type sensation on/over my ears and in the outer ear canal, which increases.

This strong tightening, twisting, pulling in my ears, eardrums/tubes is something thing I can 'feel' happen. The opposite also happens when I feel a tingling crawling sensation and the ear drums and Eustachian tubes move/release a 'little'. The vacuum lessens a 'little' and my swallowing eases a 'little'. I have audible horrid cracking against my ear drums when I swallow that can be heard by another person. This changes as the vacuum worsens.

I have hearing sensitivity (again it arrived with all the other symptoms) and all the above can happen/increase in response to any sound I hear, but otherwise it happens for no obvious reason, it's really uncomfortable.

The tinnitus also increases with sound, and stays loud after the sound has gone.

I became aware of the myoclonus noise several hours before the change in hearing/tinnitus happened. I was having a Trigeminal neuralgia flare which had relapsed over 5 days. Later that evening my neuralgia flared again the hearing loss and tinnitus followed.

I really don't know what's driving it all. But it happened at the same time.

I'm struggling with it all.

 

[Mins]

I am wondering if your Mum is too elderly or even too ill, to maybe visit you at your home? The reason I ask is because it may give you some much needed emotional relief. Seeing your dear Mum and spending some time with her could only do you both some good, your sweet daughter, also. I know this may too difficult for her to manage, it was just a thought, one that hopefully could be arranged.

You are welcome, @Jazzer made the video so it would be of help to others who suffer from extreme tinnitus.

You mention a performing arts/gift talent, may I ask what the story is behind this? I will completely understand if your are not up to this request, please know that I will not be at all offended if this is the case.

Thank you for your concern, @Mins, I really appreciate it. My tinnitus volume is still far higher than it it ever was, before my booster, although it will fluctuate from time to time. I have had one day where I felt hopeful, this was sorely needed. My hope is that days such as that will begin to happen more often.

Mums in her 80's, and the journey would be difficult for her to undertake alone. We had some special times planned this year. I feel I am grieving for the precious time I may not get to enjoy with her now.

Telephone conversations with her aren't easy because of the tinnitus, the myoclonus can be distressing, I can't blot it out. I tell her over and over how much I love her and miss her. It's upsetting for us. I can't even allow myself to cry properly and let it all out, as the tears and runny nose cause problems because of the Eustachian tube issues.

She shouldn't have to be dealing with this at this stage of her life. I'm letting so many people down now I am like this.

Please tell me how you cope with your symptoms.

Thank you for your kindness emmalee.

 

[emmalee]

Mums in her 80's, and the journey would be difficult for her to undertake alone. We had some special times planned this year. I feel I am grieving for the precious time I may not get to enjoy with her now.

Telephone conversations with her aren't easy because of the tinnitus, the myoclonus can be distressing, I can't blot it out. I tell her over and over how much I love her and miss her. It's upsetting for us. I can't even allow myself to cry properly and let it all out, as the tears and runny nose cause problems because of the Eustachian tube issues.

She shouldn't have to be dealing with this at this stage of her life. I'm letting so many people down now I am like this.

Please tell me how you cope with your symptoms.

Thank you for your kindness emmalee.

If I may say @Mins, you are not letting anyone down, this is something that happened to you, it is not your fault.

My coping strategy has not changed since being diagnosed with tinnitus. Doctors, ENTs and audiologists had no suggestions for me. What I was told was to go home and research CBT, as this may help me to cope.

Acceptance is how I make it through each day. I cannot change this and I am humbled by it all, what else is there for me to do but accept and learn to live with my tinnitus. This was working for me, and I could see goals and life experiences to enjoy in my future. Some would say that I had habituated.

All this said, here I am back at square one, unfortunately. I have all the tools needed to start all over again, so this is the plan. If I did it once, I can do it again. What other choice do I have? I have read stories of those who had serious tinnitus spikes from the vaccines and, after some time, their spikes lessened and they even went back to their baseline volume and tone. Hopefully this will happen for me.

I hope this will happen for you, too. As difficult as it is for you right now, there is always a chance that you will see an improvement. This may seem impossible for you to accept or believe right now, understandably so, but I do encourage you to hold on to some hope that this will indeed get better.

 

[Juan]

I'm struggling to cope with the nightmare I've found myself in. I have so much anxiety tearing through me because I can't do anything to 'fix' it all. There's too many things wrong, and too much noise. I don't understand how I can have all these things going on with my ears all at the same time. It's like something is driving it all.

Has anyone had a similar thing happen and any of it get better? How long did it take?

Hearing changes, settles or heals slowly. Try to get rid of all the stress in your life. Go day by day and give it time.

Getting rid of stress sometimes means making big adjustments on how we live, where we live, what we do for a living...

 

[MaxRabbit]

Hello @Mins, are you still on the forum? How are you? I hope you can report back improvements for you! Sending love to you!

 

[Loui]

Yes, I have read much the same information and I agree that the impact for hearing loss is much worse in unvaccinated people. Yet, here I am, triple vaccinated and in the throws of the worse tinnitus spike I have ever experienced, and hearing loss added to the mix. This is due to the booster, 100%.

This is the only reason that I will forgo any more vaccinations for further variants of COVID-19. Why on earth would I, or anyone else who has been through the same experience, chance it? There is no sensibility in that thinking whatsoever.

This is, of course, a very personal choice and not one that I would try to push on another. When it comes to tinnitus we are all so very unique, yet so very similar. If someone were to ask me what I think, I would not hesitate to tell them this, exactly. As tinnitus sufferers, we owe it to each other to lay all of our cards on the table for all to see. It is the right thing to do.

It is always nice chatting with you @linearb, thanks for your reply, theses discussions are necessary, we can never stop learning from one another.

I have had COVID-19 twice, the Alpha and Omicron variant, and I'm unvaccinated. I didn't get worse tinnitus or hearing loss. I don't know anyone who has suffered long-term consequences from COVID-19. Of course, I know that it's a possibility.

I suppose I just wanted to reassure you that it's possible that you won't get any long-term consequences if you catch COVID-19. I think it's up to everyone to do their own risk reward assessment and if you don't feel confident to take more boosters, then go with your gut feeling.

 

[Stuart-T]

It's all so unpredictable and hard to gauge; certainly, COVID-19 itself is well known to be pretty catastrophic for hearing, this impact is worse in unvaccinated people, and my read of the VAERS and clinical data is that COVID-19 itself causes or worsens tinnitus at about 1000x the rate that the vaccines do.

Regarding your claim that COVID-19 causes or worsens tinnitus 1000x the rate the vaccines do, do you have a citation for that claim?

As you say - it is hard to gauge. And the meta studies I have looked at are inconclusive - partly because tinnitus is relatively common - so a causal link is hard to establish.

We are seeing a lot of anecdotal evidence and most seems to be coming from people who had the vaccination and then either developed tinnitus or already had tinnitus and experienced a worsening.

Your 1000x claim may convince some that it is worth the risk on taking the vaccine - and if they subsequently experience a life changing spike - they will probably wish they had not had the vaccine.

So just to get things straight, what is the source of your figure?

 

[linearb]

Regarding your claim that COVID-19 causes or worsens tinnitus 1000x the rate the vaccines do, do you have a citation for that claim?

As you say - it is hard to gauge. And the meta studies I have looked at are inconclusive - partly because tinnitus is relatively common - so a causal link is hard to establish.

We are seeing a lot of anecdotal evidence and most seems to be coming from people who had the vaccination and then either developed tinnitus or already had tinnitus and experienced a worsening.

Your 1000x claim may convince some that it is worth the risk on taking the vaccine - and if they subsequently experience a life changing spike - they will probably wish they had not had the vaccine.

So just to get things straight, what is the source of your figure?

Looking at adverse incidents from VAERS plus a number of large-body studies on vaxx side effects as the left side of the ratio; estimated prevalence of audiological events from COVID-19 from, again, the large body studies which were available at the time (early 2021?) quickly convinced me it was a several orders of magnitude difference skewed towards vaxx safety, so I got the shots, to protect my ears and everything else. 1000x is lazy programmer shorthand for "4 9s, probably, maybe 5 9s, almost certainly more than 3 9s". (https://en.wikipedia.org/wiki/Nines_(notation)) The actual number I came up with would have been in sci notation and I rounded to nearest order, probably? If you want to attack my methodology on any of that, go for it, I'm a computer toucher who took one stats class 25 years ago.

We have a lot more data in both sets now and anyone can do this math for themselves. People are welcome to; I don't worry about this issue anymore and haven't opened this thread since whenever my last post here was.

If anyone decides to get a vaccine, or not, based on something that I write on the internet -- that person is an incredulous fool. I'm just a computer toucher who spent too much time reading COVID-19 white papers early on because I was worried about the disease and the vaccines. Now we've all had our vaccines so I don't worry about that, and even though transmission around here is still bad and people are still dying, and even though we know increasing numbers of people with long term or permanent problems from COVID-19, well, we wear N95s in risky situations, masks work better than the vaccines anyway and we've known that for a while.

A bunch us will get COVID-19, some of us will get long COVID-19, some of us will have serious long term effects from that, the vaccines help a bit but avoiding the disease in the first place is better.

We're descending rapidly into a period of increasing global instability, resource contention, open wars, etc, and so I sort of think about COVID-19 now as a background thing to be concerned with but not something that should slow the more important work of building out mutual support networks and defensible means of production of food, clean water, electricity, etc up here as the power grids and supply chains become ever more unstable. COVID-19 weirdness was just a harbinger of the market shocks I expect over the next 5-10 years. Which is a long way of saying I don't care about this thread very much anymore and so, I have provided an explanation of where that number came from which provides sufficient data to fact check it as desired, and I am happy to be done with this

Not trying to be unfriendly, @Stuart-T , it's a reasonable question, I am just tired of COVID-19 shit and it doesn't matter to me much because we just do what we do and let other people do whatever they do. I interact with society less than 95% of this forum is my guess and the interaction I do have is like 75% related to socializing my kids, and 25% playing music with a buddy.

I was a lot more anxious about this when our kids were not vaxxed and we were also having to constantly make decisions about doing X or Y -- kids have the shots now, no serious side effects we know of for any of us, my lungs are still kind of messed up from probably pre-vaccine wildtype in spring 2020 but it's not awful and doesn't cause me too much trouble, and also we have a pretty solid decision tree we've internalized for do we do this or that, do we mask for this or that, which means we don't spend much time thinking or talking about any of that shit.

I was thinking yesterday that I'm like 95% back to "normal" when I took the kids out to get ice cream -- we put on masks when we went into the small and poorly ventilated hardware store without really thinking about it and then other than that just got ice cream and hung out in the park. I am not going to say it was 2019 normal because half the shops are close and the service industry still hasn't felt all the shocks of this, but, as far as "new normal" this felt fine to me, we had a beautiful day outside, I had to think about masks for about 45 seconds total in 4 hours, and I'm also not very worried about exposure to COVID-19 / etc.

We'll see what the next plague looks like, no doubt.

 

[Stuart-T]

Looking at adverse incidents from VAERS plus a number of large-body studies on vaxx side effects as the left side of the ratio; estimated prevalence of audiological events from COVID-19 from, again, the large body studies which were available at the time (early 2021?) quickly convinced me it was a several orders of magnitude difference skewed towards vaxx safety, so I got the shots, to protect my ears and everything else. 1000x is lazy programmer shorthand for "4 9s, probably, maybe 5 9s, almost certainly more than 3 9s". (https://en.wikipedia.org/wiki/Nines_(notation)) The actual number I came up with would have been in sci notation and I rounded to nearest order, probably? If you want to attack my methodology on any of that, go for it, I'm a computer toucher who took one stats class 25 years ago.

We have a lot more data in both sets now and anyone can do this math for themselves. People are welcome to; I don't worry about this issue anymore and haven't opened this thread since whenever my last post here was.

If anyone decides to get a vaccine, or not, based on something that I write on the internet -- that person is an incredulous fool. I'm just a computer toucher who spent too much time reading COVID-19 white papers early on because I was worried about the disease and the vaccines. Now we've all had our vaccines so I don't worry about that, and even though transmission around here is still bad and people are still dying, and even though we know increasing numbers of people with long term or permanent problems from COVID-19, well, we wear N95s in risky situations, masks work better than the vaccines anyway and we've known that for a while.

A bunch us will get COVID-19, some of us will get long COVID-19, some of us will have serious long term effects from that, the vaccines help a bit but avoiding the disease in the first place is better.

We're descending rapidly into a period of increasing global instability, resource contention, open wars, etc, and so I sort of think about COVID-19 now as a background thing to be concerned with but not something that should slow the more important work of building out mutual support networks and defensible means of production of food, clean water, electricity, etc up here as the power grids and supply chains become ever more unstable. COVID-19 weirdness was just a harbinger of the market shocks I expect over the next 5-10 years. Which is a long way of saying I don't care about this thread very much anymore and so, I have provided an explanation of where that number came from which provides sufficient data to fact check it as desired, and I am happy to be done with this

Not trying to be unfriendly, @Stuart-T , it's a reasonable question, I am just tired of COVID-19 shit and it doesn't matter to me much because we just do what we do and let other people do whatever they do. I interact with society less than 95% of this forum is my guess and the interaction I do have is like 75% related to socializing my kids, and 25% playing music with a buddy.

I was a lot more anxious about this when our kids were not vaxxed and we were also having to constantly make decisions about doing X or Y -- kids have the shots now, no serious side effects we know of for any of us, my lungs are still kind of messed up from probably pre-vaccine wildtype in spring 2020 but it's not awful and doesn't cause me too much trouble, and also we have a pretty solid decision tree we've internalized for do we do this or that, do we mask for this or that, which means we don't spend much time thinking or talking about any of that shit.

I was thinking yesterday that I'm like 95% back to "normal" when I took the kids out to get ice cream -- we put on masks when we went into the small and poorly ventilated hardware store without really thinking about it and then other than that just got ice cream and hung out in the park. I am not going to say it was 2019 normal because half the shops are close and the service industry still hasn't felt all the shocks of this, but, as far as "new normal" this felt fine to me, we had a beautiful day outside, I had to think about masks for about 45 seconds total in 4 hours, and I'm also not very worried about exposure to COVID-19 / etc.

We'll see what the next plague looks like, no doubt.

Thanks for your reply. I think it is reasonable to say that COVID-19 illness is much more likely to result in tinnitus or worsen existing tinnitus than the vaccine. I was just wondering how you arrived at that figure - it may well be of that order based on the studies etc.

I am sure there is a perfectly good reason why virtually as many people are claiming they developed tinnitus after the vaccine as those who say they got it after COVID-19. If tinnitus after the vaccine is 1000x less common than tinnitus after COVID-19 - given that 90% have been vaccinated and in the UK for example - there have been 23M confirmed cases of COVID-19 (ok some will be re-infections but there will also be asymptomatic and other cases never reported) and 50M have been vaccinated (UK NHS estimate) - if your 1000x figure is true - then I would expect at least 99 in 100 comments on forums to be stating that they picked up tinnitus after getting the illness. In fact we are seeing more like a 50/50 split which is quite a spectacular mismatch given the official stats and studies. This of course will be dismissed as purely anecdotal and therefore no evidence at all.

Now I admit my math is a bit vague but I am in the ball park and you can probably appreciate here I am coming from.

Maybe the vaccinated feel more like venting their anger and frustration? Just a hypothesis of mine. Though people seem to be seeking help - and that would apply to the COVID-19 infection group as well as the vaccine group.

Very confusing - but as you say - we all have to do our own research and make our own choices.