Tinnitus from Motorcycle Riding, TMJ/Bruxism, Stress/Anxiety, Blood Pressure or Exhaustion?

Hi all!

To celebrate this week's 2 month anniversary of my tinnitus, I've decided to make this thread. I've been really trying out different things and treatments, but also to understand what exactly causes and sustains my tinnitus. Some properties about my tinnitus and onset really keep me confused. This will be a summary of important information, from which I hope maybe a few of you reading this will find some clues or have some good advice from experience. I've highlighted keywords to make an overview and reading easier on you. Thanks for your time!

Introduction and onset

For starters: I'm Jimvee, in my early twenties, from the Netherlands. My tinnitus story started the weekend of 28th of May. I bought a motorcycle more than half a year ago, got into an early accident and after months of it standing still, I wanted to go for a ride again in sunny weather. It would be about the sixth time on my motorcycle, and the first time since two or three months. I always wore 3M earplugs when I rode, and this weekend I decided to try out my new, reusasble Alpine earplugs that have been specifically designed for motorcycle riding, the version meant for circuit racing. I rode on Saturday and on Monday. Both times about 1-1.5 hours, averaging 50 km/h (30 mph), and peaking at 100 km/h (60 mph). Nothing crazy, on my simple and totally not sporty bike. On Sunday, after my first ride on Saturday, I noticed a faint ringing in my ears in bed. It was faint and might have faded away that Monday, and (stupidly, but excited from sunny weather and finally overcoming my accident trauma) that Monday I went on a second ride. That evening the ringing returned. On Tuesday I went to work (about a 45 minute car ride), but spent half my day making GP appointments and researching treatments already, and went home early. That evening I had a virtual meeting (with earbuds, but very low volume) which properly distracted me, but that night in bed I started majorly overthinking, panicking and went pretty crazy.

The sounds I'm hearing

My tinnitus started out as a clear, high pitched tone. I reckon about 14 kHz, which was about 70% in my right ear and 30% in my left. In the first few weeks, that sometimes changed. It would tilt a little more to the left, then again to the right. The loudness has always been around 7-8/10, 5-6/10 on better days. The first few days after onset, it would be gone for the first 15 minutes after waking up, but that lasted only for four days. When I started HBOT five weeks after onset, the clear tone started to really quickly oscillate sometimes (like a hundred times per second).

Since then, my tinnitus has continued to change and oscillate. I find it extremely frustrating that my current sounds are really difficult to listen to and to describe. The clear tone is still sometimes there, but for the past few weeks it felt like it started to turn more into a sort of hiss. I considered it a good sign, as well as the fact that it still changes. I am beginning to think however that this hiss consists of multiple tones harmonizing. It is extremely strange to me how sometimes I can really feel and hear the sound blasting in my (mostly right) ear, but it can still be really hard to describe. I really struggle to do so. It's like a full radiation of my ear often, that I find myself doubting what I'm hearing, even when fully focussing on it. I have not been able to find someone experiencing the same thing. The past week, it's sounded more electrical and I could hear electrical crickets after each other, but it's like they have morphed into a cricket soup of sounds and become one constant, but oscillating crickety/hissy/ringing sound. It sometimes feels like more centered in my head. It's still mostly around 6-8/10. It can really be like standing next to a jet engine sometimes (screaming/screeching?), especially in bed. The 6-8/10 can still be there when it's not a clear sound but more of a 'presence/radiation'. There have been a few moments of 4-5/10 though, mostly since the past 1,5 weeks. At the same time, I can sometimes hear my clear tone when I look for it. The only thing that has been able to mask my tinnitus has been the shower.

Since two days, I suddenly have a new, lower frequency humming/ringing, which is in my left ear, which is starting to concern me. It’s more faint, but still audible. I have a fleeting tone every few days, but never more than a few seconds.

Other issues

· Hyperacusis/noxacusis: during the first week, I definitely had some form of noxacusis that caused stabbing pain, along with hyperacusis that caused me to be really sensitive and find even low volume things way too loud. The noxacusis luckily seems to have subsided, but hyperacusis is still a slight issue, although not too much.

· Palinacousis?: this is really important to me, as it's a really specific occurance that I have not seen anyone else yet report and that leaves my ENT speechless. I posted about it before, and @Joe Cuber was able to teach me the word palinacousis, which fits the description but doesn't seem to be fully present. I only experienced this when I listened (no more than a minute) to two different tone matching/sweeping videos on very low volume. The sweeping tones would be repeated in my ear after the video stopped, in intervals of a few seconds for three minutes at most. This also included tones way below my usual tinnitus, and even the exact sweeping/increasing of the tone would be mimicked. I have not experienced this with anything else in the past months, other than accidentally with one specific high pitched masking video that was more crickety/hissy.

· Mild hearing loss: my hearing is generally fine, but with one small dip at 4 kHz, no further than 30 dB (4 kHz dips are usually a sign of being noise induced). Other frequencies are around 10-20 dB. My ENT considers it normal hearing. I feel like my tones are at around 14 kHz however, but the hearing test only went up to 8 kHz. Considering the possible palinacousis I have put off a more extensive audiogram.

· Reactivity: in the first few weeks, I started to notice my tinnitus seems to increase from some sounds/situations. The most common ones are the fan of my PC, the TV even at low volumes and playing white/pink/brown/any color of noise.

· TTTS: This hasn't really been an issue, except for two seperate afternoons after HBOT and sometimes one or two ticks very incidentally.

Possible causes

I have seen many different medical professionals in my first week(s), which I will further explain in the next paragraph, and from the beginning these have been the suspected causes that all professionals and myself have had an opinion of:

· Acoustic trauma: The one hypothesis that has been most important to me since the beginning is acoustic trauma from the motorcycle ride. However, there are still things that do not add up. Mainly because the rides were the first ones in months and weren't long, I wore special earplugs and I wasn't going that fast on a very simple motorcycle. I have never had long term noise exposure, have always been the first one to plug my ears at a loud party and always at a concert (that I rarely even attend). Considering people often ride much louder motorcycles for months or years before starting with a faint ringing, it seems disproportionate that my ride caused 8/10 multitonal tinnitus.

· TMJ/Bruxism issues: Bruxism has been a long time issue for me, not more now than in the last few years. I have been wearing a nightguard for 3 or 4 years, which was prescribed and custom made by the dentist. I do sometimes still wake up with a sore jaw. I have also long term had a clicking jaw when opening my mouth, I remember reading about TMJ five years ago. Since then it rarely caused pain, just a lot of clicking and in total around 4 times ever that my jaw was semi-locked for a few minutes. Like Bruxism, I don't think this has really increased around my time of onset. The jaw physical therapist inspected my jaw and ruled this cause out, but it's still in the back of my mind considering it's still present. I can modulate my tinnitus with my jaw (mostly increasing, but one movement decreases it for a second), but I don't think it's any more that 90% of you are able to.

· Stress/anxiety: around the time of my onset it has been a little more stressed and tense than usual and I was getting busier with tasks and assignments for work and my studies. However way less than two years ago when I was combining my study with multiple different jobs for months. If that was an 8/10, then this has been a 4-5/10. Since my tinnitus, I have been on medical leave at home. There have been plenty of moments where I was enjoying sitting outside in the sun, playing a game or just generally being distracted. It took time and effort to get there, but it was genuine. This hasn't influenced my tinnitus.

Two other common possible causes that were mentioned, but I think are pretty much ruled out:

· Blood pressure: I've been monitoring my blood pressure at least once and often times multiple times a day. During my first days after onset, I had stage 1 hypertension, but only ranging around 125/95. Since then, it's consistently varied between around 110/75 to 120/85 with three measures of 125/95 again. I have no further history of hypertension. There doesn't seem to be a correlation with my tinnitus.

· Exhaustion: what I've often seen is that exhaustion and lack of sleep can be major factors. I am insanely lucky however to report that after the first one or two hellish weeks, I have been averaging about 7.5 hours of sleep every night. I don't understand how I manage to do it, but I'm very happy that at least that's something that works for me. I have taken 3 mg Melatonin every night, but that doesn't explain why I sleep until my alarm most of the time. There doesn't seem to be a correlation with my tinnitus.

(Early) intervention

I started different interventions and appointments in my first week of onset. Given the fact that I'm in healthcare myself and my university Master's thesis is about a treatment's efficacy (albeit in a different field), I felt comfortable with research on tinnitus, and then using it to take the lead in my own treatment and to really stand up for myself when I was about to be put on 40 days waiting lists and told to wait it out.

· Silence, medical leave and relaxation: ever since my onset, I've been on sick leave and haven't left the house except for medical appointments. When I do so, I wear earplugs. When I'm in the house, I sometimes wear my Peltor X5As, but not too much as I don't want to become oversensitive. Except for the first week, I have surprisingly had moments where I have been properly relaxed and distracted and I am still able to laugh every day. I already wrote this somewhere above here about stress so I will spare my words now.

· Hospital, ENT and GP: I saw these in the first days after onset. The hospital gave me Oxazepam for one night to help me fall asleep, after which I had my GP and my ENT appointments.

· Oral Prednisone: starting on Thursday, around 4 days after onset, I really insisted on oral Prednisone, of which I had a dose of 50mg daily for 7 days. I can't say I experienced a difference, the tone stayed steady and clear, but I am convinced this was a proper dose within a proper timeframe so I'm glad to have insisted and tried.

· Jaw specialized physical therapy: considering my TMJ issues, I saw the region's leading specialized jaw physical therapist, who analyzed my posture and jaw. He cracked/stretched my neck and back, and gave me jaw exercises. Posture is something I have to keep working on and experimenting with (I am a stomach sleeper and sit at a desk most of the day), but he ruled out my jaw as the cause of my tinnitus. My gut says I still can't fully rule it out, as it's something that's still an issue for me and is often related.

· Supplements: from the first week to now, I have been taking different supplements that have been researched and/or helped others. My supplement collection gradually increased to the point where this is what I take daily:

• Turmeric Curcumin (2250 mg)
• Ginkgo Biloba (120 mg)
• Magnesium (200 mg)
• Multivitamins
• NAC (1200 mg)
• Nicotinamide Riboside (300 mg)
• Resveratrol (500 mg)
• Melatonin (3 mg) for sleep, sometimes with Valerian Root

​

· Hyperbaric Oxygen Therapy (HBOT): after 5 weeks, I started HBOT at 1.5ATA on the other side of the country, at a non-medical facility. The first session I noticed my steady tone in the right ear started quickly oscillating at the end, like a hundred times per second as a sort of video game laser. I went there on Tuesday and Wednesday, then got called from a proper medical/hospital HBOT that I could start there on that Thursday. This week I will hit my 20th 90 minute session at 2.4ATA. 20 was the maximum that I was looking at going for. This has cost me way more than I would have liked. My tones have really changed into this weird mess that I've described. I have had moments in the HBOT weeks that I first rated my tinnitus a 4-5/10, but that has never been more than a day. I'm kind of scared that my more difficult tones and my new tone may have actually been caused by HBOT, but also know that positive effects might only come after weeks. I have always worn my 3M or Howard Leight Max (SNR 37 dB) earplugs during sessions. It takes me about 50 minutes to drive there, during which I wear my earplugs. I measured (not with an app) the sound level on the highway round 70-75 dB.

· Dietary changes: from onset I have stopped drinking caffeine, after a week I stopped drinking alcohol and since then have also been careful with sugary and salty foods.

Treatment considerations
I still have a few options that I consider as treatments that might be my next step after HBOT is over.

· Intratympanic steroid injections: not done in my country for tinnitus, but I've been in contact with a clinic in London that might be able to do it. This will cost me, also in flight and hotels, but I might still be in the treatment window. The downside is that oral prednisone did not have a noticeable effect on me, but the plus side is that it might give me peace of mind to have tried this and there aren't large risks.

· LLLT: This is something that I've seen mentioned a lot of times before with different results. I found an acupuncture location nearby that does this. It's not something I have the strongest believe in, but I might as well try.

· TRT: I already have a referral for TRT, but have been saving this for last as my time and energy has gone into the more medical treatments in the acute phase, and the fact that I'm finding myself coping alright and getting some distraction sometimes.

· Another round of oral Prednisone: not too sure about this one, was thinking maybe because of my new tone. Also I have had contact (already in my first month) with someone who guides tinnitus patients to treatment in Germany, where they do IV treatment with Prednisone and Pentoxifyllin, but he didn't really see a case for it when I spoke to him a month ago after hearing the non-effect of oral prednisone for me.

Conclusion
Thanks for coming to my TED Talk and taking the time to take a look at what's going on in my situation. Take a virtual cookie as gratitude. I hope there's some information in my post that gives you some clues I may have missed, makes you think of your own experiences, makes you have suggestions/tips, etc. I'm also always looking for positivity and success stories if you recognize a part of your own story in mine!

If you've scrolled this far for a TL;DR: the underlined key words in my post pretty much sum it up.

 

Update:

Unfortunately not that much has changed. Still not any wiser in understanding my tinnitus, and it is still fluctuating around 7/10 most days. HBOT is over now after 20 sessions, and I can conclude that my tinnitus did change, but not in loudness, more in the way it sounds. Still it was only during HBOT that I was able to get my first brief 4/10 moment and had a few 5/10 moments. I know from others' experiences and what the HBOT doctors have said that it can be a while for noticeable effects. I also just started adding Taurine into my supplementation routine today for its apparently great effects on both GABA, the cochlea and nerve protection/regeneration.

I am ending on a greatly positive note, which will overshadow the first paragraph. I finally got recognized in my request for intratympanic Dexamethasone injections, which I will start either tomorrow or Monday. It's been crazy how much effort I had to put into this, but yesterday and today there were several (!) doctors getting back to me wanting to start injections for me, every one cheaper and quicker than the other. And to top off this positive note: I am still coping alright! I can still laugh every day, I can still fall asleep everyday and I honestly have increasingly longer periods that I am not bothered by my tinnitus and not even paying attention to it.

I wonder what future me will think while reading all this: is it better now? Is it worse? Did anything help? Do you hate me or are you proud?

 

Lucky that your tinnitus is relatively mild, considering that you have no problem with sleep. I struggle to get 4 to 5 hours.

Also curious how do you rate your tinnitus a 7/10; have you experienced a 10? I used to rate my tinnitus as well when it first became severe and then it blew right past my 10 that I had. I now wish I had that 10 from back in the day, it would be bliss.

 

Suffering is relative.

 

What a careful write-up of your experience and all the things you've attempted to improve your situation @jimvee. I'm glad that my palinacousis tip helped, and I'm more glad you haven't experienced it much since.

One thing that you and I have in common are the various sounds that occur. My tinnitus sounds different day my day. Some days it sounds like hissing. Other days it sounds multi-tonal, like a bunch of radios are being tuned, or a bunch of lasers are shooting through my ears. It's hard to describe and also hard to habituate to since it changes all the time.

I'm glad to see you're coping relatively well so fast, getting lots of sleep and having a positive attitude. Way to go, I hope it gets better as time goes on.

Have you tried changing your sleeping position? The reason I ask is sleeping posture affects things like jaw alignment, in my experience. Perhaps changing your position over the course of a few weeks might have an impact.

 

You know what, your reply actually came to mind a couple times today, even though it was an eventful day including traveling abroad for my first intratympanic Dexamethasone injections.

I live for critical notes and questions, but in hindsight I was really surprised and caught off guard by your comment. Caught off guard, because it is extremely contradictory to how I've experienced this community from the first moment. I honestly feel like we, all of us here, are in this together, yet you have made it seem like you want to turn this into a competition. You picked one fact from my whole story - one that I specifically mention I am lucky and grateful for - then made it about yourself and tried to force me into a position to defend myself. You could just be happy for me in this one highlight, as others are, and as I would be for you.

You have no right to know about my suffering, but I can tell you that I had started saying goodbye to my loved ones, while just in the weeks before my onset I was peaking at life, achieving goals, having ambitions, dreaming big and if all goes well I should still have around 60 years on this world. I don't know who you are, and I don't need to, but I find myself wondering what drives you. Were you having a bad day? Do you feel you miss validation yourself? Have you not had any good moments since your tinnitus? As you are not entitled to know about my suffering, I am not entitled to know about yours. But I do find myself feeling sorry for you, as I'm sure others reading this will too. I also assume others including myself are always available for your messages if there is anything you need or want to talk about. On my part that is an honest promise, and I genuinely wish you the best. Once again, you could just be happy for me for this one little highlight, as others are, as others would be for you and as I would be for you.

I will not stand trial for not being as miserable as you personally expected. I will not be forced to demonstrate my suffering. I will not apologize for still being able to laugh. I will not defend myself for having been able to sleep. And I will not be challenged for carefully starting to dream of the future again.

Thank you for your kind comments! I appreciate you taking the time to read and always being ready to share your thoughts and experiences.

Wow, indeed that must really suck to habituate to. Is it something that has changed overtime for you or has it been like that from the beginning? It really does sound like we have this in common, and I see some similarities in the descriptions you give. Isn't it so weird how it can be so hard to describe even though it's always there?

This is a great thought! I have thought about this myself before, given the fact that I have poor posture, and have been a die-hard stomach sleeper ever since I was a toddler, which is far from ideal in regards to straining my head and neck. I have tried to change this in the past weeks. I think I managed to fall asleep once on my back and twice on my side, even though it counterintuitively feels uncomfortable and weird because I'm not used to it. I'll give it some more serious attempts, thanks!

 

My tinnitus is louder than voices at a higher volume and I have no problem with sleep.

 

Happy for you. Sounds like you have moderate tinnitus.

 

Sorry, but I'm an old crusty sufferer who comes across bluntly, but I understand stand your pain. I've tried to end my life twice because of my suffering and I forget that I shouldn't be so direct.

Again, I apologize and hope you find peace.

 

I don't think that multi-tonal, permanently spiking tinnitus I literally cannot hear other people speaking over is "moderate", lol. You're a bit delusional, mate. People have different sleep patterns. My friend @DocTors_94 has some of the worst tinnitus in the world (even worse than mine) and never really had issues with sleep. Different people suffer differently. You shouldn't go around pointing fingers without knowing people's stories and perspective, regardless of how much you are suffering.

 

I appreciate your insight and apology. I truly meant and mean it when I say I'm sorry to hear about your struggle, which is why wondered if that could be a reason for the way you wrote your reply. It must be very difficult, and I'm impressed by the fact that you're already almost at twenty years in, had those dark moments, and yet you're still going!

May I ask what the main things are that give you energy, or the energy to keep going? Are there things that cause you to suffer a little less than without them? Don't feel obligated to respond.

 

Yeah, pretty challenging to habituate to. It's happened ever since the beginning, which confused the hell out of me. I didn't understand why my experience changed so drastically day to day. It took me months to figure out the limits to the variability and get used to the different kinds of days I have. I've now narrowed it down to roughly 3 kinds of days, which is a big help when trying to master habituation. Yeah, it's really challenging to try to describe the sound. Like, these sounds I don't really come across in daily life. The closest I can come is comparing the staticky sound to cicadas or bacon frying and the high-pitched squeals to something like a car's brakes squealing.

I hope it helps. I've been trying out all sorts of sleeping arrangements -- different sleeping positions, different pillows, different mattress padding, different ways to mask the noise. I'd say that I've had a bit of success, or at least I'd like to believe my tinnitus improvements has something to do with my toying around with my sleep arrangement.

 

I'm still having a similar sleep struggle over the last 18 months, and that's even with Zolpidem. If It get 5 hours, it will be broken up with multiple waking periods and likely a partial Zolpidem overnight. Never got any perceived benefits from quite a few supplements touted for sleep, or CBD oil or THC.

I don't rate my tinnitus on any scale. As someone on Tinnitus Talk has said, tinnitus has no limits. Who knows what a 10 really is.

 

My family is the thing that keeps me going, especially my wife. I have a son and two grandchildren, but unfortunately it's getting tougher to interact with them.

I feel tired all the time because I don't get enough sleep and my brain is on alert due to my high level tinnitus and hyperacusis. I feel like I can't relax.

Most things that brought me joy pre-tinnitus - like music, guitar playing, motorcycling, engineering (that gave me a great sense of accomplishment) - I can't do post tinnitus. Had to retire early. Getting harder to hold conversations because of increasing hearing loss and tinnitus interference.

What brings me peace is acceptance of my situation. It is what it is and there is no point in worring about trying to change.

You're right. I apologize to you as I assumed, and one should never assume.

 

Although this is exactly what you did to countless people on this forum. Telling people "they reap what they sow", "your tinnitus is mild" , even telling me that my tinnitus was mild after flying literally across the world for a month and a half to find any relief, then going to say that you "knew me" and you "knew bikerbandito" even though neither of us have ever met you.

You of all people have zero room to talk.

 

Yes, people can never change their point of view and see things from a different perspective, right? Also, I could very obviously see if someone's biggest issue was anxiety or not. Someone with catastrophic reactive permanently spiking tinnitus couldn't fly halfway around the world for a month and a half, while going to restaurants and the gym in a foreign country

 

You're right, my tinnitus was mild and I just had anxiety.