10 Years of Misdiagnoses, Accidents, and Bad Habits Lead Me to Where I'm Now

[frpp]

Hi, I'm Shaun (27). My tinnitus started in 2010 after an orthopedist prescribed me Nabumetone for tendinitis which turned put to be just a slightly pinched shoulder nerve. After staying on Nabumetone for 6 months and my shoulder not getting any better a slight ringing developed in my right ear (I had no idea what tinnitus was and thought very little of it). Towards the end of my script, I ran into an athletic trainer/physical therapist who told me it was be a pinched nerve and recommended to have it checked out and sure as the day is long he was right.

In 2012, two years later, my tinnitus got worse after developing TMJ from work stress, chewing pens and gum (nervous habit) and a low rumble/feeling of fluid slight dizziness came about, but these things came and went so iI stopped chewing gum/pens and thought nothing of it.

In 2014 I started working out again and hurt my back deadlifting (had to go for a personal best) so I started the bad idea of taking 81 mg baby Aspirin every day for a long time which made the pain go away, even took the edge off of my slight jaw issues. I had no idea what ototoxicity was and my parents always told me Aspirin was really good for you... and the ringing got slightly worse. Still not noticeable unless in a totally quiet room. The rumbling stopped and I stopped working out.

In 2015 I quit my job at 22 years old, 76 hours a week and commuting 14 hours back and forth. I moved back home. One night my father (60 years old) who is mostly deaf from Vietnam was blasting the TV especially loud (he was so stubborn about ever wearing hearing aids and would rather make everyone in the house suffer). I stuffed some paper into my ears and then everything went quiet so I rushed to a local urgent and found out I had pressed wax against the eardrums. The doctor microsuctioned them both out and reexamined them and gave me the okay and sent me home. The next day the pain and rumbling I had previously came back in my right ear (TTTS) so I went back back to the urgent care and the doctor told me it could be an infection so he prescribed me Ciprodex... The next week my left ear starting acting up just like the right ear so again back to urgent care I went. The same doctor told me the left ear could have also gotten infected and gave me more Ciprodex for the left ear and, at the end of the script my tinnitus was worse primarily in my right ear (I could now notice it during the day a little bit. At this point I still had no idea what was going on so I just toughed it out it.

In 2017 I had started going to a local bar, a fairly noisy place, and over a few months time began a relationship with the bartender. Over some time in our relationship I started feeling insecure so I got back into working out... bad idea again, I had just gotten my first pair of headphones and would start to blast loud music quite often. Then one day I was rushing through my workout in order to get to a new job I was starting (got screwed over the the first day working for the guy) and I injured my neck a little and so... genius idea, let's take Aspirin again and rehab it myself. 7 months of loud music working through pain the tinnitus gets worse and begins to fluctuate but only in the right ear. I'm an idiot at this point but most daily noises masked it. Oh and the girl left for college.

In 2018-2019 I was still going to the loud local bar. I also took additional cooking jobs (one of my favorite things), one being in the city, I was working 100+ hours per week. Every day I was exhausted and in pain. Every day on the way to the city job (2 hour commute) I would take take Aspirin for the pain, take pre-work out a lot, or drink Red Bull, never noticing how bad things were getting (hearing/tinnitus/neck). I was too busy to be focused on cooking and making money. One day I felt a pain in my face like all of the veins in my head blew up and I slowly started feeling/hearing the veins in my my head. I can stop part of the ringing by pressing my hand on my left jugular. I quit 2 of my jobs soon after to only work 30 hours Friday to Sunday. I started to feel a little better, tinnitus improved, still could hear my veins but, like most cooks, I continued to drink Red Bull and take 81 mg Aspirin for pain.

In 2019-February 2020 I was working at my favorite place ever, weekends only, maybe the occasional extra day. I became absolutely infatuated with my manager's daughter and we agree to meet up at a popular college bar on the one Saturday we had off... and that was the end. This place was LOUD, 100+ decibels, and we hung out and danced for 2 hours. The next morning when I woke up I felt weird, then I heard a pop in my right ear followed by a clogged feeling and extremely loud ringing and everything sounding machine like. I panicked and figured it was probably an ear infection so I got some Amoxicillin prescribed and it did nothing. My ears felt painful and my jaw was hurting so I took more Aspirin hoping and praying it would work. No such luck. Things progressively got worse from there. The stress from the hellish ringing caused me to clench and it made my TMJ come back in full force, noxacusis, and vertigo soon followed. I was destroyed with no idea what was happening.

Finally I searched and found out about tinnitus and pulsatile tinnitus. At first I thought okay, I feel it in my veins, ear and head, so I went to an ENT as soon as COVID-19 restrictions were lifted and complained about the ringing coming from my veins thinking they were constricting my ears since I can stop most of it on one side with my fingers. After the doctor examined me, he told me that he knew nothing about veins and recommended that I buy a fan because tinnitus is permanent.

I went home depressed beyond belief. My hearing slowly got worse and so did my jaw and neck. My face started hurting like a pressure/vibrating/burning feeling. My father thought it could be more to do with TMJ and sent me to see the dentist... turns out I had 2 heavily impacted wisdom teeth with cavities and was infected. I had them both pulled. Within 2 weeks I started feeling a bit better and could hear my mother's voice again, faintly but it was there.

I went to see a doctor for my TMJ. It turns out my TMJ is bad and mostly on my right side. I had trigger point injections and was given a routine to help stretch the jaw. I've stuck to it religiously and seen results.

I found Tinnitus Talk shortly after the dentist visit and lurked here until today.

My hearing has come back a lot these past few months but sounds still seem dull and I have speech in noise issues, low tones, and too many sounds at once trigger noxacusis/TTTS, and my pulsatile tinnitus is still present. Currently I'm having imaging tests done at NYU to find the source of my pulsatile tinnitus and the pains in my neck. I also have an appointment with a NUCCA Chiropractor for the neck/facial pain/vertigo.

Today my tinnitus and hyperacusis are at an all time low and I'm hoping to see further improvement with treatments.

I look forward to Frequency Therapeutics and other regenerative medicine companie for hope that of one day I'll live a normal life again. I have since given up professional cooking (kitchens can get loud), the girl, bars, all music, and dreams of France. I live with fear and anxiety of worsening everyday and protect my ears and health at all costs.

That's my story. Sorry for how long it is and for the bad grammar.

I hope if anyone outside the forum takes anything from this: protect your health and your hearing.

 

[Lyris]

Hey, thank you for sharing your story. I'm really sorry to hear you've had to go through all these trials with not only tinnitus but also the pain and your hearing. It seems to me like stress is also a major culprit in your condition. Not the main causative factor, but certainly fuel to the fire. I'm very, very similar. I'm also a TMJ/TMD patient. It's significantly progressed due to issues with my bite, the stress of the pandemic, not having the right appliance for TMD (I should have had an orthotic but all the specialists I saw just insisted on a nightguard, despite my complaints).

It's such an exhausting condition, and it really sucks when you get tinnitus flares. I'm not sure if all of my tinnitus is 100% related to the TMJ/TMD since I've had a few ear infections in my life, but never got tinnitus during or after any of them... but still, I guess anything is possible. I've also listened to a lot of music but never blasted it. Ironically, the last 3 or 4 months or so I've been committed to not wearing headphones or listening to loud music. And yet I got an excruciating tinnitus flare 1.5 years after the original onset. It just proves how stress, the jaw/neck, and teeth play a major role, something my audiologist agreed with. I can sympathize with you too because I also have an impacted wisdom teeth - and like you, I hope removing the bottoms will do me good. (During my recent tinnitus flare, the entire back of my jaw and neck swelled up on the right side, and the bottom wisdom tooth felt so sore and sensitive underneath the skin where it's impacted. Awful...)

Have you considered getting Botox injections for your clenching and grinding? I'm currently on the waitlist to meet with an oral surgeon, it seems like the best possible solution aside from surgery. After the first consult, I'll get the injections 1-2 weeks later. In the meantime, I got a muscle relaxer and I'm going to begin taking that as soon as it gets here. And focusing on tongue/jaw posture, forward head posture, etc. are also really important for us! It's really worth trying anything to promote better health. Poor tongue and head posture are definitely linked to worse TMJ/TMD, bruxism, and tinnitus.

Anyway, just wanted to let you know you're not alone. It's really frustrating how random and individualized these conditions are but that doesn't mean that there's no hope!

 

[Lilah]

@Lyris and @frpp,

Is your tinnitus very somatic and bilateral? Do you have inner ear pain?

 

[Juan]

This place was LOUD, 100+ decibels, and we hung out and danced for 2 hours. The next morning when I woke up I felt weird, then I heard a pop in my right ear followed by a clogged feeling and extremely loud ringing and everything sounding machine like. I panicked and figured it was probably an ear infection so I got some Amoxicillin prescribed and it did nothing. My ears felt painful and my jaw was hurting so I took more Aspirin hoping and praying it would work. No such luck. Things progressively got worse from there.

At that time you should have given Prednisone or Deflazacort a try.

Did you get a proper examination at the ENT? Audiogram, tympanogram, speech in noise test, LDL test, camera down the nose and throat, etc?

 

[Greg Sacramento]

With what causes TMJ, comparisons need to be made has how TMJ associates to tinnitus. The DCN (effect) has association to hearing / tinnitus, as there are tiny nerves that connect to jaw and ears, but as Susan Shore has said, any association with physical jaw and teeth problems need to be fixed. Primary and secondary causes needs to be discovered.

A primary cause is often from the neck, muscle spasms that change the structure of C1 and the C spine. Having a weak neck - muscles and C spine from a minor whiplash or jerking of head, or muscles spasms caused from the central spine from bending forward. Problems can then set in when the mouth is open too long (dental) and when there's pressure placed to the lower jaw. Mechanical injuries is technical cause - bite becomes off - lower jaw moves forward. From this, clenching can develop from both physical and emotional stress. Clenching can also harm teeth. Worn out teeth or a mouth with dental problems can be programmatic with any of the above.

TMJ caused from the above, including clenching can cause infection in the gums, in teeth and jaw due to teeth changes from movement. Tongue movement sometimes temporary from stress can increase problems. Infection (bacteria) needs to be cleared with getting gum pockets in order caused from dental - teeth issues. Teeth need to put into order and then a mouth guard is needed. Neck treatment may need consideration.

A good dentist will always consider the neck - injury - from muscle spasms and clenching - independent or (not - emotional stress). Also what part of dental concerns pre TMJ and present with having TMJ where infection (bacteria) often has developed from condition of teeth and gum pockets. Stress can cause gum and teeth problems as well.

@frpp Pulsatile tinnitus usually associates to veins and arteries, but a developed problem with this can be set off from hypertension.

 

[frpp]

@Lyris Thank you for listening. Stress is definitely an issue. It's more anxiety and stress now trying to figure what to do with my life, while also diagnosing and treating any possible underlying health issues I may have.

TMJ sucks bad. Definitely get the wisdom teeth removed, I started feeling much better after having them pulled. I have considered botox but I don't have much knowledge on it, next time at the dentist I'll definitely inquire. Please let me know how they work out for you. Postures is huge and the reason I'm checking out a NUCCA Chiropractor. My neck is definitely messed up from football,working out, years of sitting/laying wrong and keeping my head down while cooking, I'm tall and I swear these prep tables and stoves are made for shorter people.

@Lilah my tinnitus is bilateral but it's a mixed bag, my left ear tinnitus is very pulsatile and somatic, while my right ear tinnitus is very somatic from TMJ but there's definitely hearing loss.

@Juan I had no idea what Prednisone was or the cause of what was happening at the time. If I knew I would have gone to the ER. NO, the ENT I saw was shit, rude, arrogant and cared not what I had to say. He did put a camera up my nose and throat. He said everything was fine and as stated before to "buy a fan". What's awful and funny (sarcasm) is while he was looking down my throat he completely missed the the wisdom teeth, swelling mouth/gums and infection, that my dentist caught immediately less than a week later. I do have plans to see another one at the moment, I'm just trying to juggle multiple doctors and appointments at one time. I live two hours outside of NYC so it's a hike for me to find/see good doctors. A lot of the doctors where I live are either bad and or take 1-3 months for an appointment. Going to NYC has been like a godsend for both doctors and appointments. I can literally get better doctors (I do due diligence on each one) and have an appointment oftentimes in under a week.

@Greg Sacramento Thank you for the detailed information on TMJ. How does tongue movement affect it? My dentist, like most of the the "doctors" I've seen, did none of that and simply referred me to a dentist and oral surgeon. I have mild hypertension, slightly above normal, which I'm working to get sorted by eating better (didn't use to eat much mostly just nibbled on things at work) taking omega 3s, not drinking (didn't much before) meditating, taking regular walks and reduced my caffeine intake to zero. Heart issues do run on my father's side, he's had two heart attacks, my uncles had one, and my grandfather had three, two of them before he was 25, a stroke and had two have a pacemaker put in, so I'm going to see a cardiologist soon as well.

 

[Lyris]

@Lyris and @frpp,

Is your tinnitus very somatic and bilateral? Do you have inner ear pain?

Warning, this is a dense reply. I do hope it helps, though. I like to be thorough in case anyone else in a similar spot needs more information. (This is aimed at people who mainly have somatic tinnitus/TMD.)

First, yes, I do have a lot of inner ear pain. I have crackling sounds as well, sometimes randomly but especially when I flex my ears. This entire week it felt like someone was squeezing my eardrums and it would happen at random times. I occasionally got a deep stabbing sensation in my right ear.

I got a hearing test today and the audiologist said my right eardrum reacted 'a bit differently' to the pressure... I forget the name of the test, but it begins with a tinnitus? They play a series of beeps but you don't respond if you can hear them. Anyway, I was told no hearing loss/both ears are 'normal.' But my newly affected (right) ear is bothering me more all around. It feels like there's an odd filter over my hearing, almost like I had a bad cold or I'm hearing everything through a seashell, if that makes sense? The ENT said what I'm feeling can be linked to the eustachian tube dysfunction. I also hear a hiss on that side when I have earplugs in and swallow, like gas being released from a canister. There's really not much else to do except nasal spray and time.

About the tinnitus... so, the new wave has been bilateral with the electrical sound concentrated in my right ear. It didn't start getting 8/10 bad until I felt like I couldn't open my mouth to chew or brush my teeth on the right side because my jaw and neck hurt that badly. When my physical symptoms peaked, the tinnitus was flaring to the point where it was switching tones and intensity day 15+ times per day and almost nothing masked it. High pitched beveled sounds, a mosquito buzz, an engine noise that cycled through my ears - you name it, I had it. I did some experimenting and wearing my night guard and top+bottom Invisalign permanent retainers sets off the noises badly. I can increase them to peak volume within 20 minutes after wearing either ortho appliance, and they don't calm down until I take them out and use hot compresses + Advil. (I'm at a loss about this, but I am seeing an oral surgeon in a few weeks and will report back.)

Prednisone did nothing to help with my jaw or the ringing... I was actually taking 20 mg for three days, and both just progressively grew worse and worse. I originally asked for them because someone 4 ft. away shouted near me for a few seconds and it felt really loud (I do have sensitive hearing, though). But then it became pretty clear that my issues were too severe to have anything to do with somebody's voice. The ENT told me that if it had been 'that' loud to cause pain and tinnitus, he would have seen some hearing loss in my right ear or a more serious issue with it.

Anyway, ever since my jaw began to calm down on its own and I stopped both the ortho appliances + avoided solid food, my ears have calmed down. It's a good sign. Even though the noises haven't entirely resolved, I'm glad I don't need a noise machine on at all hours of the day to function. But my jaw is still bothering me to the point that I do need daily NSAIDs and got a muscle relaxer. I'm beginning the MR tomorrow.

Finally, I suspect I have a problem with my impacted wisdom tooth the right side. It feels sore under my tongue and flared for the first time during this tinnitus spike... I read recently someone had tinnitus and pain due to their impacted tooth trying to erupt. So, if you happen to feel pain in/around your impacted wisdom teeth, it's worth getting it checked out.

 

[frpp]

@Lyris Same with all of the different tones, hissing, engine noise, I get the gas can noise when I stretch my jaw. The pinched feeling, stabbing pain, but the main difference is I get this full fluid like feeling mainly in right ear and a little in my left.

 

[Rjbookworm]

I can relate to ototoxic medication induced tinnitus. You're not alone when it comes to that trigger. It's great that you acknowledged the role that loud environments had with your tinnitus. Are you taking any supplements for your tinnitus?

 

[frpp]

@Rjbookworm Magnesium, melatonin for sleep, b vitamins for energy since I can't sleep very well these days (I wake up every 4 hours automatically, I think I may have developed migraines) and a multi vitamin. I try not not to overdue it on the supplements. Most I just mentioned I was taking prior to my last acoustic trauma.