Hello everyone!
First of all: I wasn't sure if I should post this in the "Introduce Yourself" forum or in "Pulsatile Tinnitus Support" since I'm new, but I decided to go with this one because the other one seems to contain mainly regular tinnitus threads. My apologies if I chose the wrong forum.
But that aside, I'll start with telling some details about myself. My name is Jim, I'm a 35 year old guy and live in The Netherlands. My height is approximately 183cm and my weight is about 65kg. Tall and very slim, I know. I can eat whatever I want and hardly gain any weight at all, that's just the way it is. It doesn't really bother me to be so slim but I tried to build a little more muscle mass to compensate and that's where my (long and strange) story starts.
At the beginning of February 2019 I bought a pair of dumbbells to begin with some weight lifting exercises at home. I followed the advice on internet websites, start with minor amount of weight (the pair I bought has separate disks to add or remove weight),do easy exercises and gradually increase both as time passes (when I got used to it). Of course my muscles felt sore and the other usual symptoms which you get after exercising,
but I gave it some time and then continued again. I felt like I could keep increasing weight and do longer exercises before I was used to it, so I started pushing myself to the limits. That was my first big mistake. The second big mistake was the surface I did the flat laying exercises on. I didn't use a workout bench as recommended but the attic floor, which is obviously as hard as a rock.
On to the moment when things went wrong. Two weeks after starting with the exercises I was laying flat on the attic floor again, with the dumbbells next to my arms. Pressing them up (arms sideways) to hold them above me and then lower them until the point where they almost touch the floor. I was really pushing myself, had a lot of trouble doing the movement. And then suddenly I heard a cracking noise somewhere in my neck and felt a strange sensation near the center of my chest. I immediately stopped, stood up and noticed that my breathing was irregular. I could fully breathe in and out but both ways were "stuttering" (you could describe it as some sort of hiccup) which was worst at maximum inhale and deepest exhale point (felt more like skipping parts). Of course this scared me and I quit the exercises for a while, as I thought I went too far and irritated some muscles. A few days later this issue was gone and two weeks later I resumed the exercises. I should've known better but stupidly enough I did the same thing and the issue came back, but much worse. Because this time not only my breathing was stuttering, but all the muscles in my body suddenly seemed to be weak.
When I bend over to pick something up for example, my body shakes like a machine without oil. Rusted metal trying to move, that kind of stuff. Same with my limbs. Lifting something (even lightweight things) makes my body shake like I don't have the strength for it anymore. Even simple things like holding a glass of water makes my arm shake when I stretch it. Standing up from laying flat on the floor without using my hands is a shaking nightmare. Bending my head in any direction makes me shake, getting worse the further I try to go. When I stretch my fingers I can see them tremble along with my hands. Also got a whooshing heartbeat sound varying between my left and right ear at random moments when I bent my neck in (also random) positions, lasting for a few seconds. I immediately stopped doing the exercises again and haven't touched those dumbbells ever since, hoping that resting would help but this time the issues didn't go away. They're still present today.
After finding out that resting didn't help I went to my local doctors office and explained what happened. She didn't believe it because she had never heard of something like that happen. I was told it was stress, that my muscles just became weak because I wasn't active enough, and the only option was to visit a physical therapist. This was nonsense of course but I went anyway because they might know how to solve these problems. I had an intake, and she basically said the same as the doctor. So I got some walking and fitness exercises, didn't have the idea that it was having any effect but I continued going to these sessions for the next few months (insurance covered it and I thought it could have effect later).
Fast forward to early April. I went to the local doctors office to get earwax cleaned, because my left ear was clogged. An assistant used a syringe to clean the left ear, this went a little harsh but it was OK. Then I thought why not do the right ear as well because that would save me a trip later. So she used the syringe again but I suddenly heard an explosion-like sound and a very sharp pain in that ear. The assistant said that she didn't know what happened, I stood up and walked away. On my way home the pain became stabbing, getting more intense with every minute passing by. In the evening the pain became unbearable, felt like someone was stabbing a knife into the right side of my head and twisting it around. I called another doctors office (local one was closed) and explained the situation. They told me to wait it out until the next day and take some ibuprofen. I had no other options so I waited. The day after I went back to the local doctors office as there was orange fluid coming out of the ear and heard a whooshing heartbeat sound from within the same ear,
probably because it was full of fluid. I was sent to hospital for a check by an ENT doctor.
He told me that I had a ruptured eardrum but this would heal by itself, and no further actions were necessary. The orange fluid was "normal" and I was sent home. Fluid kept coming out of the ear and the pain remained the same a week later, so I decided to visit the local doctors office again. She examined me and asked when I started taking antibiotics because I had an ear infection. Strangely enough I never got any from the ENT doctor, she was unpleasantly surprised and gave me those right away. A few days later I got a call from the hospital, saying that the ENT decided to give me antibiotics "just to be sure" and I could pick that up at the pharmacy. A while later the orange fluid stopped, the whooshing sound in the ear disappeared but the stabbing pain was still there. Just before I went to the ENT check-up appointment a few weeks later there was a bit of orange fluid coming out of the ear again. I went to the hospital, told and showed him (I brought a piece of paper which I put on my pillow the night before) but he said that "it wasn't possible" and that I should just "forget about it". I argued but he simply smiled and kept telling me the same, so I went home again. A few days later the orange fluid stopped again and never came back. Got a check-up with the local doctor sometime later and the eardrum was healed, but the stabbing pain remained. It "radiated" to the skull area above the ear for a while but that disappeared. Instead it moved to the area below the ear where the jaw joint is located, but it became less frequent over time.
Early in June I woke up with a new surprise: eye floaters. People who have them know how extremely annoying this can be. I only had them in my left eye at first but they increased in amount and some of them grew bigger (grouped together?). Shortly after that I got a few in my right eye as well. At the same time I started experiencing a feeling of pressure in my head and behind both eyes, and I could actually feel my own heartbeat (pulse) in my head and eyes as well. When staring at a solid object, focusing on that pulse, I could even "see" it. Also got flashes, afterimages, starbursts, blue field entoptic phenomenon, seeing a bit of static (visual snow?) and night vision drastically degraded. At random moments I also saw "stars" and felt light-headed for about 10 seconds. So I visited the local doctors office yet again, was told it was nothing to worry about, it's all normal, and she didn't believe what I said about the pressure and pulse feeling. Just to be sure, I was sent to hospital to check my eyes and they found no problems. Had a few more of those visits throughout the year but they never found anything wrong, and all the issues I mentioned are still present today.
Moving on to the beginning of August, where things got even stranger. A few days earlier the stabbing pain completely stopped so that was a relief. I was happy that there was finally something positive, but this feeling was short lived. Because one morning I woke up and heard this incredibly annoying and dominating high-pitched sound throughout my head, but the loudest in my right ear. It's difficult to describe what it sounds like, I've searched for examples but I can't find anything that closely resembles it. I guess it's "hissing" or "electric", seems to be flowing (not static volume) and it's like my entire head is completely submerged in a haze of this sound.
Like I said, it's the loudest in the right ear but it's 100 percent in sync with my heartbeat (pulse) there. Still confused from what I heard, I got out of bed and walked to the bathroom to shave myself. I didn't get much sleep that night so I yawned, and that's when I got the next unpleasant surprise: when I opened my mouth, the lower jaw deviated to the left side and a bulge appeared on the right jaw joint area. I touched it to feel what it was, and it felt hard as bone. I also experienced a high-pitched sound like a vibrating glass concert in my right ear (best example I could think of) the further I opened my mouth. As of the same day I also experienced a very subtle "ticking" sound in my right ear. It's completely random, comes and goes and has no steady rhythm. Sometimes it's only a few "ticks" spread over a minute, other times it's like a machine gun rapid firing for a few minutes.
All this scared me of course but I noticed certain actions influenced the "main" sound, which I will describe below:
I have to add that when I'm walking and either pull my neck back or clench my teeth together, the sound decreases in volume by approximately 90 percent so I can barely "hear" my own footsteps anymore. The same goes for when I'm in a car as a passenger. I usually lean on the car door with my elbow and I can "hear" every single vibration in the sound (it goes along with it),unless I clench my teeth or pull my neck back. Then I can hardly "hear" those vibrations anymore.
I've been trying to find out what causes these strange and crazy symptoms but I have no idea. The only thing I noticed is that the "sternocleidomastoid" (SCM) muscle on the left side possibly has something to do with it. Whenever I contract my jaw muscles I can see that one moving and that's when the high-pitched glass concert sound comes to life. The harder I contract the muscles the louder it gets. The right side SCM muscle hardly seems to move at all, no matter how hard I try. I don't know it that has something to do with it. I also noticed that my jaw muscles "shake" as well whenever I contract them, like the rest of my body which I told about earlier.
So of course I went to the local doctors office to show the bulge on my jaw joint and tell them about the somatic pulsatile tinnitus (found out the name because I searched for my symptoms and ended up on this website). The doctor was amazed and got a few other doctors inside the building to come take a look as well. All three of them said that they had never seen it before and had no idea what it was. After discussing with each other they sent me to a hospital to get it checked. The staff there made a "normal" and a "3D" scan, then I was sent home to wait for results. Got a call a while later, they made an appointment for me with a jaw surgeon (not very promising). I went there and he told me that I had bone exostosis on my right jaw joint of unknown origin. He never saw it before as well, I mentioned the stabbing pain on that exact location before the bulge finally appeared (must've been growing for a while, only I didn't notice it) but he said that was purely coincidence. I was told that removing it might solve my tinnitus and possibly make my lower jaw open straight again (without deviating to the left). Was sent home to think about it but of course the decision was made pretty quickly. I wanted that bulge gone, and hoped that the other issues would be resolved as well.
The hospital planned surgery but I had to wait 2 months because it required 2 surgeons, due to it being difficult. Eventually had the surgery, they removed a piece of bone the size of a marble according to one of the surgeons (I never saw it). The piece of bone was gone, I recovered at home but the tinnitus and lower jaw deviation remained the same. And there's still some sort of bulge. I can feel a part of the joint moving/sticking out to the right when I open my mouth, this doesn't happen on the left side.
I even got a new issue: when I open my mouth, I hear a soft clicking / crunching noise at some point. The surgeon told me that would fade in time but unfortunately it never did, it's still present today. There also seems to be a subtle form of tinnitus in my left ear now, which I can't modulate myself. It's going up and down in volume but much quieter and completely different than the right ear sound. Maybe worth mentioning is that loud sounds (even talking) makes hearing in that left ear "distorted". It's been like that for years, might be earwax or something, no idea, just thought I'd add it here as well.
After recovering from the surgery I went to a whole bunch of doctors, specialists, physical therapists and even a chiropractor. Been to a few hospitals as well, where I got an MRI of my head to check for a tumour (wasn't found), an MRI of the right ear (looked normal) and a CT of my neck ("we saw nothing really special on it"). I only got those scans because I kept asking for better research, I was being persistent. They did a blood test as well to check for some deficiencies but nothing was found.
But in the end I got the same story everywhere:
"Tinnitus is always hearing damage".
"You went to a loud concert".
"There's nothing you can do about it".
"I haven't heard of tinnitus with a pulse so it doesn't exist".
"I don't see anything wrong with your jaw".
"I don't believe you".
And that list of comments goes on and on. My local doctor suggested me to talk with a psychologist, which prescribed me a few different anti-depressants, so I could hopefully sleep better and "more easily accept my condition". They made no difference with sleeping though, I still wake up in the middle of the night after falling asleep of pure misery and then stay awake for hours. I tried dozens of neck/jaw exercises to make the tinnitus fade, even had dry needling/acupuncture from one of those specialists but that didn't help either. One of them borrowed me a "TENS-device" to try at home, which sends electrical signals through pads you stick onto your skin. He had no idea where to place them so I tried it on the back of my neck (near the top), near the jaw joint and near the ear. I used settings which were mentioned in a tinnitus research with such a device (on the internet), but all without any result.
As a last resort I called my insurance company so I could visit a hospital in Antwerp (Belgium). They mention on their website that they know about this and other kinds of tinnitus, and the person on the phone assured me that they're experienced with it as well. Various examination and treatment methods were mentioned, including for somatic and pulsatile tinnitus. But the ENT doctor I had the appointment with last month had absolutely no idea what I was talking about. She made all the comments I mentioned above, even though I stated what I was told and what's on the hospital website. I almost had to beg but got her to arrange an appointment with a physical therapist at that hospital. He will evaluate my story and do some testing, then decide if there's a possible physical cause for my situation. This appointment is at the end of February. The ENT doctor will only get me examined if he says it's needed, so I'm praying for that.
And now I'm here. I have 4 different appointments with psychologists this month because my doctor desperately wants me to accept my tinnitus and move on with my life. She says "some things just can't be explained so go talk and have peace with it". But she has no idea what daily life is like with this nonsense going on. It's pure hell, driving me insane day and night. I hardly get any sleep because of the sound dominating the whole time so that makes me both physically and mentally tired. I tried everything I could think of and I'm getting desperate. My social life took a huge hit, it's extremely difficult to concentrate and my memory has become very short-term.
Just remembered some more strange issues which all developed throughout the months. I often have the sensation of something moving (feels like fluid slowly crawling) inside both my ears when laying in bed, especially when I change position from one side to the other. Sometimes I see a bright flash with my head trembling for a split second when laying in bed with my eyes closed (like being struck by lightning, best way to describe it). I also get random muscle twitching in my limbs, most often in one of my legs (goes on for minutes in a rhythmic pattern). Another thing is that my hands and feet are often pretty cold. And last is that the pulsatile sound in my head also gets louder when doing activities (walking up stairs and stuff).
I'm truly sorry for this very, very long message but I couldn't tell the whole story without all the details. You'll probably have to read through it several times to fully understand everything, it's just so much information but I think it was necessary to know what's going on. I hope I didn't forget something, tried to remember everything as you can see by the length (took me a few hours to type, with breaks in between). If anyone has any ideas or suggestions then please let me know. I am thankful for any help, it's greatly appreciated.
Wishing you all the very best, have a nice day and kind regards, Jim.
First of all: I wasn't sure if I should post this in the "Introduce Yourself" forum or in "Pulsatile Tinnitus Support" since I'm new, but I decided to go with this one because the other one seems to contain mainly regular tinnitus threads. My apologies if I chose the wrong forum.
But that aside, I'll start with telling some details about myself. My name is Jim, I'm a 35 year old guy and live in The Netherlands. My height is approximately 183cm and my weight is about 65kg. Tall and very slim, I know. I can eat whatever I want and hardly gain any weight at all, that's just the way it is. It doesn't really bother me to be so slim but I tried to build a little more muscle mass to compensate and that's where my (long and strange) story starts.
At the beginning of February 2019 I bought a pair of dumbbells to begin with some weight lifting exercises at home. I followed the advice on internet websites, start with minor amount of weight (the pair I bought has separate disks to add or remove weight),do easy exercises and gradually increase both as time passes (when I got used to it). Of course my muscles felt sore and the other usual symptoms which you get after exercising,
but I gave it some time and then continued again. I felt like I could keep increasing weight and do longer exercises before I was used to it, so I started pushing myself to the limits. That was my first big mistake. The second big mistake was the surface I did the flat laying exercises on. I didn't use a workout bench as recommended but the attic floor, which is obviously as hard as a rock.
On to the moment when things went wrong. Two weeks after starting with the exercises I was laying flat on the attic floor again, with the dumbbells next to my arms. Pressing them up (arms sideways) to hold them above me and then lower them until the point where they almost touch the floor. I was really pushing myself, had a lot of trouble doing the movement. And then suddenly I heard a cracking noise somewhere in my neck and felt a strange sensation near the center of my chest. I immediately stopped, stood up and noticed that my breathing was irregular. I could fully breathe in and out but both ways were "stuttering" (you could describe it as some sort of hiccup) which was worst at maximum inhale and deepest exhale point (felt more like skipping parts). Of course this scared me and I quit the exercises for a while, as I thought I went too far and irritated some muscles. A few days later this issue was gone and two weeks later I resumed the exercises. I should've known better but stupidly enough I did the same thing and the issue came back, but much worse. Because this time not only my breathing was stuttering, but all the muscles in my body suddenly seemed to be weak.
When I bend over to pick something up for example, my body shakes like a machine without oil. Rusted metal trying to move, that kind of stuff. Same with my limbs. Lifting something (even lightweight things) makes my body shake like I don't have the strength for it anymore. Even simple things like holding a glass of water makes my arm shake when I stretch it. Standing up from laying flat on the floor without using my hands is a shaking nightmare. Bending my head in any direction makes me shake, getting worse the further I try to go. When I stretch my fingers I can see them tremble along with my hands. Also got a whooshing heartbeat sound varying between my left and right ear at random moments when I bent my neck in (also random) positions, lasting for a few seconds. I immediately stopped doing the exercises again and haven't touched those dumbbells ever since, hoping that resting would help but this time the issues didn't go away. They're still present today.
After finding out that resting didn't help I went to my local doctors office and explained what happened. She didn't believe it because she had never heard of something like that happen. I was told it was stress, that my muscles just became weak because I wasn't active enough, and the only option was to visit a physical therapist. This was nonsense of course but I went anyway because they might know how to solve these problems. I had an intake, and she basically said the same as the doctor. So I got some walking and fitness exercises, didn't have the idea that it was having any effect but I continued going to these sessions for the next few months (insurance covered it and I thought it could have effect later).
Fast forward to early April. I went to the local doctors office to get earwax cleaned, because my left ear was clogged. An assistant used a syringe to clean the left ear, this went a little harsh but it was OK. Then I thought why not do the right ear as well because that would save me a trip later. So she used the syringe again but I suddenly heard an explosion-like sound and a very sharp pain in that ear. The assistant said that she didn't know what happened, I stood up and walked away. On my way home the pain became stabbing, getting more intense with every minute passing by. In the evening the pain became unbearable, felt like someone was stabbing a knife into the right side of my head and twisting it around. I called another doctors office (local one was closed) and explained the situation. They told me to wait it out until the next day and take some ibuprofen. I had no other options so I waited. The day after I went back to the local doctors office as there was orange fluid coming out of the ear and heard a whooshing heartbeat sound from within the same ear,
probably because it was full of fluid. I was sent to hospital for a check by an ENT doctor.
He told me that I had a ruptured eardrum but this would heal by itself, and no further actions were necessary. The orange fluid was "normal" and I was sent home. Fluid kept coming out of the ear and the pain remained the same a week later, so I decided to visit the local doctors office again. She examined me and asked when I started taking antibiotics because I had an ear infection. Strangely enough I never got any from the ENT doctor, she was unpleasantly surprised and gave me those right away. A few days later I got a call from the hospital, saying that the ENT decided to give me antibiotics "just to be sure" and I could pick that up at the pharmacy. A while later the orange fluid stopped, the whooshing sound in the ear disappeared but the stabbing pain was still there. Just before I went to the ENT check-up appointment a few weeks later there was a bit of orange fluid coming out of the ear again. I went to the hospital, told and showed him (I brought a piece of paper which I put on my pillow the night before) but he said that "it wasn't possible" and that I should just "forget about it". I argued but he simply smiled and kept telling me the same, so I went home again. A few days later the orange fluid stopped again and never came back. Got a check-up with the local doctor sometime later and the eardrum was healed, but the stabbing pain remained. It "radiated" to the skull area above the ear for a while but that disappeared. Instead it moved to the area below the ear where the jaw joint is located, but it became less frequent over time.
Early in June I woke up with a new surprise: eye floaters. People who have them know how extremely annoying this can be. I only had them in my left eye at first but they increased in amount and some of them grew bigger (grouped together?). Shortly after that I got a few in my right eye as well. At the same time I started experiencing a feeling of pressure in my head and behind both eyes, and I could actually feel my own heartbeat (pulse) in my head and eyes as well. When staring at a solid object, focusing on that pulse, I could even "see" it. Also got flashes, afterimages, starbursts, blue field entoptic phenomenon, seeing a bit of static (visual snow?) and night vision drastically degraded. At random moments I also saw "stars" and felt light-headed for about 10 seconds. So I visited the local doctors office yet again, was told it was nothing to worry about, it's all normal, and she didn't believe what I said about the pressure and pulse feeling. Just to be sure, I was sent to hospital to check my eyes and they found no problems. Had a few more of those visits throughout the year but they never found anything wrong, and all the issues I mentioned are still present today.
Moving on to the beginning of August, where things got even stranger. A few days earlier the stabbing pain completely stopped so that was a relief. I was happy that there was finally something positive, but this feeling was short lived. Because one morning I woke up and heard this incredibly annoying and dominating high-pitched sound throughout my head, but the loudest in my right ear. It's difficult to describe what it sounds like, I've searched for examples but I can't find anything that closely resembles it. I guess it's "hissing" or "electric", seems to be flowing (not static volume) and it's like my entire head is completely submerged in a haze of this sound.
Like I said, it's the loudest in the right ear but it's 100 percent in sync with my heartbeat (pulse) there. Still confused from what I heard, I got out of bed and walked to the bathroom to shave myself. I didn't get much sleep that night so I yawned, and that's when I got the next unpleasant surprise: when I opened my mouth, the lower jaw deviated to the left side and a bulge appeared on the right jaw joint area. I touched it to feel what it was, and it felt hard as bone. I also experienced a high-pitched sound like a vibrating glass concert in my right ear (best example I could think of) the further I opened my mouth. As of the same day I also experienced a very subtle "ticking" sound in my right ear. It's completely random, comes and goes and has no steady rhythm. Sometimes it's only a few "ticks" spread over a minute, other times it's like a machine gun rapid firing for a few minutes.
All this scared me of course but I noticed certain actions influenced the "main" sound, which I will describe below:
- Opening my mouth makes the sound louder (the further it opens, the louder it gets).
- Moving my lower jaw forward makes the sound louder (the further it moves forward the louder it gets).
- Clenching my teeth together makes it quieter (the harder I press, the quieter it gets).
- Pulling my neck back/cervical retraction makes it quieter (the further I pull back the quieter it gets).
- Pressing left/right/front on upper or lower jaw makes the sound louder (the harder I press the louder it gets).
- Pressing on lower jaw from underneath makes the sound quieter (the harder I press the quieter it gets).
- Pressing on forehead makes the sound quieter (the harder I press the quieter it gets).
- Pressing on my eye sockets makes the sound quieter (the harder I press the quieter it gets).
- Pressing anywhere on the left side of my skull creates a similar high-pitched sound but only on the left side (the harder I press the louder it gets).
- Pressing anywhere on the right side of my skull makes the sound in my head quieter (only a little bit, strength makes no difference).
- Pressing on the left side of the back of my skull creates a similar high-pitched sound but only on the left side (the harder I press the louder it gets).
- Pressing on the center of the back of my skull creates a similar high-pitched sound but only on the right side (the harder I press the louder it gets).
- Pressing anywhere on top of my skull creates a similar high-pitched sound but only on the right side (the harder I press the louder it gets).
- Pulling my hair makes the sound quieter (the harder I pull the quieter it gets).
- Looking up makes the sound louder (the further I look up the louder it gets).
- Looking down makes the sound quieter (the further I look down the quieter it gets).
- Bending my head left to the shoulder makes the sound quieter (the further I bend the quieter it gets).
- Shaking my head from left to right or the other way around makes the sound briefly appear on those sides.
- Yawning (as mentioned earlier, the harder I yawn the louder it gets).
- Talking (sound gets louder with everything I say, worse when I talk louder).
- Swallowing (every time I swallow the loudness flares up and immediately goes down again).
- Chewing (every time I chew the loudness flares up and immediately goes down again).
- Walking (every step I make the loudness flares up and immediately goes down again).
I have to add that when I'm walking and either pull my neck back or clench my teeth together, the sound decreases in volume by approximately 90 percent so I can barely "hear" my own footsteps anymore. The same goes for when I'm in a car as a passenger. I usually lean on the car door with my elbow and I can "hear" every single vibration in the sound (it goes along with it),unless I clench my teeth or pull my neck back. Then I can hardly "hear" those vibrations anymore.
I've been trying to find out what causes these strange and crazy symptoms but I have no idea. The only thing I noticed is that the "sternocleidomastoid" (SCM) muscle on the left side possibly has something to do with it. Whenever I contract my jaw muscles I can see that one moving and that's when the high-pitched glass concert sound comes to life. The harder I contract the muscles the louder it gets. The right side SCM muscle hardly seems to move at all, no matter how hard I try. I don't know it that has something to do with it. I also noticed that my jaw muscles "shake" as well whenever I contract them, like the rest of my body which I told about earlier.
So of course I went to the local doctors office to show the bulge on my jaw joint and tell them about the somatic pulsatile tinnitus (found out the name because I searched for my symptoms and ended up on this website). The doctor was amazed and got a few other doctors inside the building to come take a look as well. All three of them said that they had never seen it before and had no idea what it was. After discussing with each other they sent me to a hospital to get it checked. The staff there made a "normal" and a "3D" scan, then I was sent home to wait for results. Got a call a while later, they made an appointment for me with a jaw surgeon (not very promising). I went there and he told me that I had bone exostosis on my right jaw joint of unknown origin. He never saw it before as well, I mentioned the stabbing pain on that exact location before the bulge finally appeared (must've been growing for a while, only I didn't notice it) but he said that was purely coincidence. I was told that removing it might solve my tinnitus and possibly make my lower jaw open straight again (without deviating to the left). Was sent home to think about it but of course the decision was made pretty quickly. I wanted that bulge gone, and hoped that the other issues would be resolved as well.
The hospital planned surgery but I had to wait 2 months because it required 2 surgeons, due to it being difficult. Eventually had the surgery, they removed a piece of bone the size of a marble according to one of the surgeons (I never saw it). The piece of bone was gone, I recovered at home but the tinnitus and lower jaw deviation remained the same. And there's still some sort of bulge. I can feel a part of the joint moving/sticking out to the right when I open my mouth, this doesn't happen on the left side.
I even got a new issue: when I open my mouth, I hear a soft clicking / crunching noise at some point. The surgeon told me that would fade in time but unfortunately it never did, it's still present today. There also seems to be a subtle form of tinnitus in my left ear now, which I can't modulate myself. It's going up and down in volume but much quieter and completely different than the right ear sound. Maybe worth mentioning is that loud sounds (even talking) makes hearing in that left ear "distorted". It's been like that for years, might be earwax or something, no idea, just thought I'd add it here as well.
After recovering from the surgery I went to a whole bunch of doctors, specialists, physical therapists and even a chiropractor. Been to a few hospitals as well, where I got an MRI of my head to check for a tumour (wasn't found), an MRI of the right ear (looked normal) and a CT of my neck ("we saw nothing really special on it"). I only got those scans because I kept asking for better research, I was being persistent. They did a blood test as well to check for some deficiencies but nothing was found.
But in the end I got the same story everywhere:
"Tinnitus is always hearing damage".
"You went to a loud concert".
"There's nothing you can do about it".
"I haven't heard of tinnitus with a pulse so it doesn't exist".
"I don't see anything wrong with your jaw".
"I don't believe you".
And that list of comments goes on and on. My local doctor suggested me to talk with a psychologist, which prescribed me a few different anti-depressants, so I could hopefully sleep better and "more easily accept my condition". They made no difference with sleeping though, I still wake up in the middle of the night after falling asleep of pure misery and then stay awake for hours. I tried dozens of neck/jaw exercises to make the tinnitus fade, even had dry needling/acupuncture from one of those specialists but that didn't help either. One of them borrowed me a "TENS-device" to try at home, which sends electrical signals through pads you stick onto your skin. He had no idea where to place them so I tried it on the back of my neck (near the top), near the jaw joint and near the ear. I used settings which were mentioned in a tinnitus research with such a device (on the internet), but all without any result.
As a last resort I called my insurance company so I could visit a hospital in Antwerp (Belgium). They mention on their website that they know about this and other kinds of tinnitus, and the person on the phone assured me that they're experienced with it as well. Various examination and treatment methods were mentioned, including for somatic and pulsatile tinnitus. But the ENT doctor I had the appointment with last month had absolutely no idea what I was talking about. She made all the comments I mentioned above, even though I stated what I was told and what's on the hospital website. I almost had to beg but got her to arrange an appointment with a physical therapist at that hospital. He will evaluate my story and do some testing, then decide if there's a possible physical cause for my situation. This appointment is at the end of February. The ENT doctor will only get me examined if he says it's needed, so I'm praying for that.
And now I'm here. I have 4 different appointments with psychologists this month because my doctor desperately wants me to accept my tinnitus and move on with my life. She says "some things just can't be explained so go talk and have peace with it". But she has no idea what daily life is like with this nonsense going on. It's pure hell, driving me insane day and night. I hardly get any sleep because of the sound dominating the whole time so that makes me both physically and mentally tired. I tried everything I could think of and I'm getting desperate. My social life took a huge hit, it's extremely difficult to concentrate and my memory has become very short-term.
Just remembered some more strange issues which all developed throughout the months. I often have the sensation of something moving (feels like fluid slowly crawling) inside both my ears when laying in bed, especially when I change position from one side to the other. Sometimes I see a bright flash with my head trembling for a split second when laying in bed with my eyes closed (like being struck by lightning, best way to describe it). I also get random muscle twitching in my limbs, most often in one of my legs (goes on for minutes in a rhythmic pattern). Another thing is that my hands and feet are often pretty cold. And last is that the pulsatile sound in my head also gets louder when doing activities (walking up stairs and stuff).
I'm truly sorry for this very, very long message but I couldn't tell the whole story without all the details. You'll probably have to read through it several times to fully understand everything, it's just so much information but I think it was necessary to know what's going on. I hope I didn't forget something, tried to remember everything as you can see by the length (took me a few hours to type, with breaks in between). If anyone has any ideas or suggestions then please let me know. I am thankful for any help, it's greatly appreciated.
Wishing you all the very best, have a nice day and kind regards, Jim.
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