- Jun 15, 2023
- 13
- Tinnitus Since
- 05/2023
- Cause of Tinnitus
- Motorcycle ride with earplugs?
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:
· 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.
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
· 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.
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