Guillain-Barre Symptoms & Severe Tinnitus Spike After Moderna COVID-19 Vaccine Booster

[Roy E]

So tinnitus has many parents, as a young man I worked in factories and nightclubs, went to concerts, neck injuries from 3 car accidents, NSAIDs, BP meds, beta-blockers and benzos, anti-inflammatories, antibiotics. I also may have mild TMJ, and have had lifelong issues with fluid/congestion in ears, I'm 56, and oh yeah, I have vitiligo, an autoimmune disease. One doctor told me recently if you have an autoimmune disease like asthma, rheumatoid arthritis, vitiligo etc., (any) vaccines, may or may not cause the immune system to overreact with a cytokine storm, inflammation and attack your own body.

I also understand that tinnitus can start at any time, to anyone, at any age, for no reason.

But the tinnitus didn't start until after 2013 when I was T-boned with whiplash (my 3rd auto accident with neck injury), I think it was either the neck injury or the large amounts of Ibuprofen I took before the surgery. The tinnitus wasn't that bad until 2021, easy to ignore but doc prescribed me Xanax to help with sleep as I also developed anxiety/panic disorder/PTSD around the same time.

Skip ahead to November 2021 when I got the Moderna COVID-19 Vaccine Booster, within hours I had Guillain-Barre symptoms, which have mostly gone away since but it flared up again just last night, I still have some numbness and tingling in my left leg. A few days later my tinnitus doubled in volume and has not gone away, I am now having difficulty working as I have severe insomnia, severe anxiety/panic 24/7, brain fog, even with Xanax and Ambien CR I only get 3-5 hours of sleep, usually waking to a panic attack around 3am. No appetite, withdrawn from family, no desire to do anything, I am hypersensitive to all noise, can't stand the sound of music, have to keep turning the TV sound down. But I have to pay bills so I'm driving for Uber but with the newfound hyperacusis I have to wear noise cancelling headphones and the road noise still flares my tinnitus but the noise from any job is going to do that, it's just that I can't hold down a job because of the panic attacks that have started again (before Moderna Booster, I had not have a tinnitus spike in 3 years). Because of the timing I'm pretty sure the Guillain-Barre attacked the myelin in the nerves in my cochlea and it's probably permanent.

It's really weird, I've tried all the recommended supplements and either they do nothing or they make the tinnitus worse, increase the pitch/sound, move it from one ear to the other. Foods too, can't eat spicy, salty anymore, just drinking protein shakes cause that's all I can get down due to butterflies in stomach. Last night I was reading on here it could be Eustachian tubes and my ears were pretty blocked, people recommended a decongestant but both Benadryl and Sudafed make the tinnitus worse. I used to take a lot of supplements, Turmeric, L-Theanine, Taurine, but now everything just flares my tinnitus. I've tried the so called natural Glutamate and NMDA blockers, got a few hours of lowered tinnitus followed by severely flared tinnitus.

So, I've spent several hundreds on supplements, and have quit taking everything except for the Xanax, Ambien and BP meds. The only way I can get to sleep is by listening to neuromodulated masking MP3s (the ones with straight white noise spike my tinnitus). I went to an ENT, they did see fluid in the ears but no infections, tried to sell me a pair of hearing aids (with tinnitus masking straight white noise) for $4k, even though the hearing test showed very mild hearing loss, the hearing aids just amped up the volume and my hyperacusis.

I'm in treatment with an Upper Cervical chiropractor (Atlas Axis) who claims to have cured many people of ear ringing caused by TMJ, Tinnitus and Meniere's Disease by adjusting the C1, C2 and C3 vertebrae, all three of mine were out of alignment due to the accidents. My neck feels much better but so far no lessening of the tinnitus, I've already bought the package deal and have several more visits. The doctor seems to be confident it's all from my neck because when I turn my head to the right side or yawn, the tinnitus gets temporarily much louder. He also said he has witnessed so many of his patients having a relapse in symptoms after getting vaccinated, but that it does go away or get better after a few months, he thinks from the inflammation subsiding, so I'll just keep going.

I'm also in TMS (Transcranial Magnetic Stimulation) treatment for tinnitus and the related depression, anxiety, insomnia. Five treatments under my belt, still have 31 more half hour treatments to go. They say that no matter the cause of the tinnitus, it's basically an overactive Auditory Cortex making the noise.

Also doing Acupuncture, for what it's worth...

I'm praying something works and soon as my mental health is in a downward spiral. I'm going through my savings and unless I can get a job where I can deal with the tinnitus and panic attacks, I'll have to sell my house, then what? You can't get disability for tinnitus or anxiety, and even if I could, it would take years and I can't sit around all day taking Xanax and watching TV in zombie mode. I am lost...

I've lost most of my friends during COVID-19 (ghosted), and most of my family have passed, I have my sister and can't bare the thought of leaving her alone, but also at 56 I also can't see suffering for another 20-30 years with this tinnitus, insomnia and anxiety. I am not suicidal but sometimes the only thing that can calm me down is thinking about it, I am not me anymore, and I can not guarantee I won't get mentally worse. I can get used to the noise but it's the constant anxiety and insomnia that is killing me.

So that's my story, trying too many things at once but I'm in panic mode, I already had pretty bad anxiety and was having difficulty coping before the tinnitus doubled after Moderna COVID-19 Vaccine Booster... I've seen many doctors and pharmacists all saying they've seen a huge jump in people complaining of sudden onset tinnitus after the vaccines. I used to complain a lot about the mild tinnitus I had before (I pray I can get back to there if not better), never knew it could get this bad, I never would have taken the vaccine, any/all of them. They'll have to hold me down to get another one in me. I know there's supposedly a higher chance of getting tinnitus from the COVID-19 infection, either way, if I had not gotten vaccinated and then the tinnitus spiked from COVID-19, I'd be in the same boat, beating myself up for getting/not getting the vaccine.

I had a dream out of the blue where I saw the words (Proof of Concept), the following day I read an article that said right now there are 3 tinnitus drugs in trials but due to the FDA policy of proof of concept that it'd be another 10 years before they could be approved, yet you can rush out a vaccine with so many side effects (including tinnitus) in about 9 months by partnering with the media to scare the hell out of people, go turn on CNN right now and I'll bet they're talking about how you should get a 4th booster.

I'll update if there are any improvements with the Upper Cervical or TMS treatments or anything else I try. I only posted to vent, to get it off my chest and on this forum because of how supportive everyone seems to be. Thank you for listening.

 

[ajc]

The doctor seems to be confident it's all from my neck because when I turn my head to the right side or yawn, the tinnitus gets temporarily much louder.

Your doctor is clueless, sad to say. 70-90% (depending on source) of ANYONE who has tinnitus can modulate their tinnitus loudness or pitch with jaw and neck movements. Being able to do this has no bearing whatsoever on if your tinnitus is caused by neck issues.

Sorry you're having to deal with this crap! Tinnitus sucks. Good luck man.

 

[Roy E]

That is disappointing to hear but thank you for the info.

 

[UKBloke]

The COVID-19/jab debate has been a contentious one on this forum for well over a year now so it's very saddening to see stories like yours coming through.

The first impression I got from your post is that the anxiety seems quite high - you're searching many different angles for a lot of rhyme and reason that quite frankly you may never find a satisfactory answer to. Anxiety by itself can be a dreadful thing to deal with. Couple it with all the other stuff that's going on and you have quite a toxic mix. FWIW, if I were in your shoes right now I'd try and strip back all of that which I don't have much control over and focus on one or two key things that can help lift my situation. You've more less said it here:

I can get used to the noise but it's the constant anxiety and insomnia that is killing me.

Insomnia won't kill you. Depression is, worrying about things in the past that we can't change. Anxiety is, worrying about things in the future that haven't yet happened. The main point being; we have no control over either. I don't mean to sound glib because I understand the uphill struggle you're facing, but to tackle anxiety one needs to try and focus on the present. It's where your head needs to be right now - in the present.

In terms of diet etc there are some good people here who can offer you help. Regarding tinnitus you're a 'long-termer' like me. There are many others here too who know the ups and downs of tinnitus and we've all shared this journey over the years, so it may help to glean some nutrition advice from a fellow tinnitus sufferer. @Lane knows his stuff in this regard.

By the way, your friends that 'ghosted' you regarding COVID-19 were clearly not friends in the first place. Your life is already better without them. Surround yourself with people who can accept your right to have a view that's different to theirs. Even if this is only person, a true friend is better than 10 frauds. I think you'll claw your way out of this but it's going to take time. Good luck, man.

 

[volsung37]

I feel for you Roy E and agree with much of what you say.

I had been almost completely free of tinnitus for over 3 years then I took the Pfizer jab in November.

I am in a dark place too.

Over Christmas I hardly got out of bed.

Today I managed to do some work but I have to think everything through first. There is no joy in anything except perhaps walking by the sea.

I am a bit older than you. 60 this year.

All I can advise is take everything very slowly. Try and eat unprocessed foods. Loke yourself I have found supplements pretty useless. I believe eating varied nutritious food provides all the vitamins and nutrients we need.

Then there is just time. It took me several years to get out of my tinnitus before. I agree that tinnitus is partly an overactive nervous system. That can take years to calm down.

I believe the way the vaccines were pushed on everybody, vulnerable or healthy alike was criminal. There are many, many formerly healthy people suffering from vaccine damage.

Good luck man.

 

[Roy E]

The first impression I got from your post is that the anxiety seems quite high - you're searching many different angles for a lot of rhyme and reason that quite frankly you may never find a satisfactory answer to.

Thank you all for taking the time to read my post and reply with kind words and support. I totally agree about the anxiety, it's been an issue for me for several years stemming from PTSD.

In 2015/16 I was diagnosed with sleep apnea and have been using a CPAP ever since, around the same time I started taking Alprazolam to help me sleep, however I was recently prescribed Ambien CR (nighttime) in addition to the Alprazolam (daytime) and that has only made the insomnia even worse, making the anxiety worse, and making the tinnitus worse...

According to my CPAP data I just looked at with an app, I actually do not have obstructive sleep apnea, it says I have Hypopnea. So the data shows in the early morning hours around 12:30, then again at around 2:30am (Ambien?) my throat closes about a 1/3 or more and lets less air in, the CPAP machine detects this and ramps up pressure but can't seem to improve airflow even at max pressure. So in the last hour of my sleep I am struggling to get enough oxygen until I finally wake up hyperventilating in fight or flight mode and then can't get back to sleep because of the anxiety. The CPAP data shows peak Hypopnea times correlate exactly with nightly waking times.

I have adjusted the CPAP settings and hopefully finally knowing what the issue is will help with the anxiety, hopefully I'll just be able to wake up and say "relax, you know why this is happening, it's not in your head, this is a physical issue". The research I did on Hypopnea gave several causes but the two I related most to were age and nighttime sedatives. My brother recently completed TMS and said it halted his depression and anxiety, he also had a UP3 surgery several months ago and was able completely get off of the CPAP. So, there's always hope.

Thanks again, my heart goes out to all of you who have been dealing with this beast far longer than I have. Tinnitus Talk has been a great help to me.

 

[Roy E]

I had been almost completely free of tinnitus for over 3 years then I took the Pfizer jab in November.

That is awful, to be almost free and then have it come back... My Upper Cervical doctor is trying to be positive and telling me the gains people had made but then lost after the vaccine, he said after a few months the bad stuff slowly went away and most were feeling better again. All we can do is hope, the Guillain-Barre symptoms I had have mostly gone, my hope is the tinnitus will also fade or lower, even a little would be a lot and I'd be grateful.

 

[volsung37]

That is awful, to be almost free and then have it come back... My Upper Cervical doctor is trying to be positive and telling me the gains people had made but then lost after the vaccine, he said after a few months the bad stuff slowly went away and most were feeling better again. All we can do is hope, the Guillain-Barre symptoms I had have mostly gone, my hope is the tinnitus will also fade or lower, even a little would be a lot and I'd be grateful.

We live in hope Roy. I always say another day closer to habituation, cure or death. Whichever way it will cease.

 

[Roy E]

So I had the COVID-19 booster in November 2021, the same day I had a reaction with pins & needles in my arms, legs, hands & feet falling asleep, it still comes and goes and I still have some nephropathy that's getting worse. Worst thing was a few days later I got a severe spike in my pre-existing mild tinnitus, on a scale of 1-10, it was a 2 from 2014 to 2021. After getting vaxxed it jumped to about a 9, I hesitate to say 10 as I don't want to T-off or challenge the gods...

I panicked, was getting 1-3 hours of sleep and was slowly losing my mind up until a couple weeks ago when I decided I had to learn to live with this or off myself. I am 56, have suffered for many years with PTSD, clinical depression and severe anxiety/panic disorder, so the idea of death has always been comforting to me, most of my family are over there and I really miss them. But I decided for one, I could not do that to my remaining family, and two, that's not the way I want to be remembered. So I hit bottom and decided to try really hard to live with this. I went through the 7 stages of grief and suddenly started sleeping again, like 5-7 hours a night, and I started eating again. I decided to ignore my hyperacusis, which I always knew was in my head and so now I can tolerate loud TVs and music again.

I also stopped taking all the supplements except for B6, B12, D3 and Serrapeptase. I tried every supplement ever listed on this forum and nothing helped, and worse my mind convinced me they were making the tinnitus spike, but in truth my tinnitus spikes everyday anyways. It starts off quiet on one side when I wake up, then it builds all day long, by the end of the day there are up to 3 separate tones, one of them pulsatile in my entire head. So now I eat what I want, take what I want, the noise is the noise is the noise.

I'm still not really there yet, I find it very hard to find joy in anything, I avoid people, won't wast money on going out for a nice meal as the noise will just ruin it. Even your biggest supporters can only listen to you for so long before they start glazing over and you find yourself not wanting to be around anyone, you watch them laughing, eating, drinking and having fun and all you can do is envy them and pray it never happens to them. So I have accepted this is my life, for now anyways, just haven't gotten to the point where this feels like the new normal yet.

I'm done spending thousands on supplements, medications and alternative treatments like Upper Cervical treatment, or the TMS, that actually made it worse, so many sympathetic grifters out there promising false hope in exchange for my desperate money. My ENT put me on prednisone and ordered an MRI, no acoustic neuromas, nothing out of the ordinary, prednisone was awful. It's still shocking to find doctors and ENTs who think the tinnitus noises come from the ears, I had to explain to my ENT the sound was generated from the Auditory Cortex. I have learned more than I care to know about this awful disease that no one seems to know or even care about.

I have seen many specialists and they all say the same thing, they have seen so many new cases of sudden onset hearing loss and tinnitus since the COVID-19 vaccine came out, my audiologist said it seems to cause the same type of cochlear hair cell damage as loud acoustical trauma. I think it's more than that, I think for some people like me it causes an auto-immune inflammatory response that not only damages the cochlear hair cells, but also the auditory cortex and the nerve passageways leading up to it. This is what my neurologist believes and I believe there was a study done in the UK backing this up, in the article they talked about how it seems to be related to the way the nerves responsible for taste and smell are temporarily damaged, so if true there may be hope the tinnitus will calm down eventually as nerves can heal? That's why I'm taking the D3 and the Serrapeptase, they are anti-inflammatories and a new study indicates D3 might help calm down or prevent auto-immune issues?

I did everything wrong according to what I've learned, I panicked causing Insomnia and panic attacks, I blamed myself for it, I tried to control it with supplements, medications, treatments, but in order to get back to what sanity I had before, I had to at least try everything, if I didn't I'd still be wondering, was there something that could have helped?

For me the answer is a big NO. I did get about 5 hours of total tinnitus relief from synthetic GABA, and about 2.5 days of much lower tinnitus from PharmaGaba, but my brain is really smart, it figured out what I was trying to do and it never worked again and seemed to spike things, temporarily. If something was out there that really worked, then Neil Young, Barbara Streisand, Pete Townsend, Roger Daltrey, Ozzy, Metallica etc... would have found it and it would be in every newspaper and every online tinnitus forum. Honestly if I had their money, it's worth repeating, if I had their money I'd be on a plane right now to South Korea having my own stem cells harvested and implanted in my ears because why the heck not?

If I could do one thing over besides never getting vaxxed, I would have gone to the ENT first, Prednisone has restored sudden hearing loss and just may have prevented or lessened my tinnitus. I think I would recommend to anyone, no matter what the cause, if you have noticeable hearing loss or sudden onset tinnitus, get to an ENT, DO, MD ASAP and get on a six day prednisone pack, they say the inflammation causes a Glutamate spike in the ear which causes the damage.

Things that do help me:

I fall asleep to this Acoustic Neuromodulation Tinnitus Masking Music that seems to work well with my 4000 Hz tinnitus (I used a 3rd party site to convert it to an mp3 and download it). They say it can retrain your brain, re-route the auditory signals, but nah, no, no, it just works while you're listening or falling asleep to it. To help habituate I do not listen to this during the day, if you do you'll never learn to ignore it.



Tired of earbuds falling out all night long I found these inexpensive Bluetooth side sleeper headphones (see how I blacked out the brand name, not pitching anything here so don't even... just trying to be helpful). It's stretchy, comfortable and sweatproof, comes in purple even...

Also, I plan to re-enter the workforce now that I can sleep again and my savings uhhh... Well, there are lots of jobs out there but I'm struggling to come up with an idea of what I can do? I know many of you have lived with this for decades and still manage to work and raise families which amazes me cause right now all I can think is tinnitus, tinnitus, tinnitus, tinnitus... I used to work in office mid level management but now I have serious brain fog, trouble concentrating and remembering things, like say the last 3 months? So I need something easy, low stress, not too noisy, not too quiet. Loud environments really spike my tinnitus, so I found a pair of B**ts Bluetooth earbuds with no slip ear wingtips, same tech/chip as AirPods with noise cancelling and adjustable transparency mode so you can hear people talking to you and some background noise, so that may be helpful?

As I said, my tinnitus is pretty loud and I'm still habituating to it. How do you all do it out in the real world, the noisy, hectic real world? My days of leading meetings and giving presentations is over because my brain feels fried right now, don't really care about the money, more about low stress for me right now. Any serious suggestions would be helpful, please and thank you!

Roy