Anyone with Similar Strange Variations? (Somatic Tinnitus)

Appologies for the long post. My intention would be to find someone with similar symptoms like me as most people I know and talk to have a different situation than me (where they have more of a pure tone that is on 100% but only varies in volume)

I developed my tinnitus in November 2018 - So around 4-5 months ago.
I have two theories about what was the reason behind it. I got some water in my right ear one day at a waterpark. I shook my head quite hard and got it out. The next day I went back to the waterpark and had the feeling that I got water in my left ear. Tried shaking my head, but had the feeling it was still there. One day later I still had the feeling of water in the ear so I "violently" shook my head in great downward force repetative times (yea.. stupid....) While I don't remember the excact moment I noticed the tinnitus (I also find this strange as it should be a defining moment..) It was either directly following the shaking of the head or the morning after.

Two theories about what triggered the tinnitus:
1. The shaking of the head resulted in complications in the neck/jaw/head that triggered it (supported a bit by some of the symptoms I will mention later)
2. The intense focus that "there is something ie. water, in my ear, over a couple of days made the brain discover the sound(s) that were there that was already filtered out by the brain.

I have quite good hearing. A bit of a loss in the high frequencies, but not likely that this is the cause of the tinnitus. (according to the doctor) I also have normal MR and x-ray of inner ear, head and neck. All cleared from several specialists in terms of ear issues etc. Chiro says I have tention in the back of my neck (but this can obviosuly also be because of the stress I have been under)

The tinnitus started off as a hizz in my left ear. It went on like that for about 4-5 days until one morning I woke up and it was gone. I was very relieved. Sadly it came back late in the evening. Over the following weeks and months it started "living" a lot and today it is almost in constant change from day to day or even minute to minute.

I feel a bit confused, lost and alone with my symptoms.
1. Many days (like 2-3 days a week) it can be almost totally silent. In order to hear it I would need to go to a quiet room and place the hands over my ears. I would then notice a very, very low buzz. This is something I for sure would not notice if I would not check for it and is obviously not an issue for me. Often these periods will last for whole days and be connected (so I would have two whole days in a row without any sound) - No, its not habituation etc. its simply not there.

2. During night and rest its almost always very silent. I can hear it, but just like a low hum. There are for sure nights that are more sound than others, but 90% its very quiet. This often continues in the morning, but after getting out of bed I sometimes can hear when its going to be a "noisy day" it then starts building up. I can have days where its "on" the whole day until I go to bed. It then quiets down again and the next day will usually be a good day.

3. On "not quiet days" it lives a lot. Its mostly a couple of tones in my left ear, but sometimes also in my right ear. This would then be a different sound than the one in the left ear. It feels like pulling a string. From a very low buzz/hum that goes all the way up to the more classical puretone. Sometimes another tone on top of this that is more up/down. Some days its more like a "head buzz" and not the feeling its coming from the ear. Some days its fairly quiet, so much I don't notice it much of the time, but there can be sudden spikes that I notice like every 5-10 minutes. It seems to come and go and volume moves up and down very frequently. Makes me fear that habituation would be more difficult. Good thing is that mostly its not very high in volume

4. I am able to modulate the sound a lot! I can do several movements that increase the volume of the T a lot: Wide open of mouth, trusting the jaw forward, bending neck backwards to the right, pressing my head down (think this is because of activating my neck muscles and not the pressure on my head...) pinching my lips together and moving chin down, pressing a finger in behind the ear will also modulate the sound. My chiropractor is not able to reproduce this by doing the same movements on my head and jaw. Its only when I use my muscles to do these movements so it made him conclude its not because of a compressed nerve (unless the nerve is compressed only when my muscles are activated) I have been able to almost Complete (ref. point 1) remove the sound by doing some of these movements or pressing some points in the back of my neck. Sometimes it seems that chewing and swallowing triggers the sound (increases in volume or turns on)

5. Even after monitoring this for 4-5 months now I am not able to pinpoint what would trigger a day of "silence" or a day of "noise". One experience I had on a silent day was falling to sleep in my car (passenger seat ) for only 5 minutes and then waking up to tinnitus. Was this my brain turning it on or the fact that the neck was bent backwards - no idea. Today, I had a moderate sound day. I went to the dentist who had to fix a tooth in the upper back of my mouth (close to the ear that has the most T) She used anestesis and once I was done the T was "gone" (ref. point 1) Was it because of the anestesis, the fact I was tensing my muscles over a period or time, or keeping the yaw open for a long period of time.. no idea. Chiropractic work seems to make it much better, but sometimes it can come back with a revenge during the night or following day. Same with massage that seems to quiet it down a lot. Also a warm shower has also turned it off or made it better several times.

6. I also have a lot of crackling sounds in my eustatian tubes and ear that has gone on since the onset of T. It feels like the crackling sound also varies based on the sound/no sound or pitch of the sound. Not sure if this is simply because of the focus on the ear that has made the brain turn up the focus/sound on this vs what it has in the past.

This has had a massive negative impact on my life. Having said that I'm sure I can move on and with time be able to do as many as my friends who has T with no issues as they have learned their brain to filter it out and/or don't react to it… But what keeps me back a bit in "letting go" is the search for a "fix" If this is due to muscle tension etc. and that can be fixed or if there is a solution or someone here with similar experience with these type of symptoms it would be great to hear your story. I'm thankful for the quiet days and the fact that its fairly low volume and farily quiet during nights.. but the noisy days and the whole thing still kinda.. sucks

Again, sorry for the long post and happy to hear any feedback, experience or encouragement

 

I know exactly how confusing this can be. Have you noticed any correlation between how long you sleep at night and the fluctuations? For me, more sleep equals a better day.

 

I guess the short answer is "no". I have had good nights with bad days and bad nights with good days. Also it seems its the same with "stress" everyone I speak with says that stress etc. triggers/worsen their T, but for me it seems to have no impact. Even on high anxity days with lots of stress it can be quiet. Makes me think its something else that controls it and I suspect muscles somewhere. Maybe in the neck or jaw.

 

Your situation sounds so much like mine. I also developed tinnitus back in November 2018 and I also can’t remember the exact moment it started. Just like you, I find this to be very strange.

My tinnitus is like a hizzing sound in my left ear. The sound/volume of it changes from day to day and throughout the day. The volume of it seems to be much like yours, as I often have to go into a room and listen for it in order to notice it. I also sometimes have like a “head buzz” which is different from the tone in my left ear. According to my ENT I have very good hearing and no hearing loss.

In the beginning of my tinnitus the sound would get louder when I was lying down or went to bed. But now, my Tinnitus is worse during the day and often almost completely goes away when I go to bed. Sometimes when I lay down it goes away 100% which is so strange to me. This makes me think that the tinnitus could somehow be related to some neck issues. Or maybe blood flow? I don’t know.

I am also able to modulate the sound a alot - like if I push my chin inwards using my palm, it gets much louder. Or if I pull my ear in an upward/outward motion away from my head, I can actually make it stop for that little while.

And my ear also makes a lot of cracking sounds and it often feels quite “full”. These cracking sounds are only in my left ear. I think my ear made these cracking sounds even before my tinnitus but I’m not sure...

So, many of our symptoms are the same. And even after monitoring all this for almost 4 months now, I also have been unable to find a real pattern, which is so frustrating. It all feels like a puzzle that has to be solved. I suspect that my tinnitus is either 1) because of noise trauma (from a concert but I didn’t get tinnitus until about ten days later and I’m not sure if the tinnitus would vary as much as mine does if it was from noise trauma), or 2) because of some issues with my neck (maybe because I sat in front of my computer for around 14 hours every day for two whole months writing my thesis).

I’m thinking about going to see a chiropractor or osteopractor, but I’m a bit afraid that something might go wrong and make it worse.

I wrote my first post on here last week where I explain everything a bit more. You can read it here, if you want: https://www.tinnitustalk.com/threads/ever-changing-tinnitus-varies-in-different-positions.33971/

 

My tinnitus has many similarities to both of your stories in the thread. I'm still trying to understand what caused it. And if it is muscle/neck/ETD, can anything be done about it?

 

@HeavyMantra Sorry to hear that. I’m not sure if anything can be done. Or at least I don’t know who to ask about it. It’s frustrating.

 

Thanks Hemda. (and heavy mantra) Indeed your symptoms sounds very familiar to mine. I actually also had the same thing during night in the beginning where it would get worse. At one point it turned and usually now I am the same as you where at night its usually quiet and if I have a "bad day" and go to bed it usually quiets down. Do you experience different sounds thru the day as well?

The "crackeling" sounds from the ear was there since the onset of the T. (i think…) It sounds like the eustation tube that open or closes or a sound in the eardrum itself when I move my jaw. At morning it can be quite different than in the afternoon and evening. I have no idea if this is related to the T and it might be that my intense focus on the ear has amplified these sounds that might always have been there.

I'm pretty sure that this is muscle related, but not sure anything can be done. While I have had effect from chiro and massage its only temporary. I have considered Botox treatment. I have a theory that it is related to neck muscles pretty high up in the neck (I have suspected Splenius Capitus, but its just a theory based on how I am able to modulate the T)
Still; I'm probably at the point now where I am starting to give up trying to "cure it" and rather turn my focus to the enormous power of the brain in terms of filtering it out. Our brain is bombarded with tens and thousands of perceptions every second and it effectivly sorts out everything that is not seen as important, dangerous, interesting etc. ie. you don't notice your socks until I ask you to feel them around your feet or you don't see the rims of your glasses until I ask you to look for them even if it sits in plain sight the whole day.. Not saying its easy or that it will not take time and effort… but I am without any doubt that its possible. And if I (we..) first had to get this T-troll in our head I am thinking it could have been worse. Im starting to enjoy the days without T more and glad that while its annoying as hell - its still fairly low volume… Look up Julian Cowan Hill on Youtube. He is great at helping you find the motivation and self care you need to relax and let go of the tinnitus. I am far from that point my self. But determined to get there!

 

Yes, the sound or volume differs throughout the day.

For me it also sounds like the eustation tube that opens or closes when it cracks. And if I for instance get a hiccup, it’s like “air” goes all the way out into my left ear (the ear with tinnitus) like the tube is open or something. And nothing usually happens in the right ear, where the tube feels “closed. I don’t know if this makes any sense. But all this doesn’t bother me - just the tinnitus does.

I still keep hoping that all this is related to some muscle/neck issues and that it can be treated. But like you say, I’m also tired of trying to find a cure.

I have watched some of Julian Cowan Hill’s videoes and I also like how he talks so much about self care etc. But it definietly takes time to get there.

 

Finally found some people with almost the same somatic sounds as myself with neck, jaw movements, swallowing, and ear crackling. I had regular tinnitus for 8 years which I vomplecomp habituated to not even noticing it anymore. Relapse 5 months ago and now all this new somatic stuff! It's not easy nope but I'm hoping it's possible to habituate to somatic T also. Sometimes I don't notice it as much either when I'm busy which suggests part of it is definitely the brain amplifying it when I consciously pay attention.
Also mine is all in my left ear and left aide. Strange!
Paul

 

Hi Paul, Thanks for your comment.
Do you know what triggered your (new) tinnitus? As for adapting/habituating to it, it's all the same. No matter what it is and how you got it the tinnitus sounds are generated in the brain. So its the same approach to treating it as with what you have already mastered before - so I'm sure you will be able to do it again. Trick is letting go. I struggle with this myself, but heading in the right direction. What I also find strange for me is that at night in bed its very, very quiet.. Might be because of the body and mind is relaxed, but always hear people struggle with that the nights are the worst, but for me its the opposite.

 

When tinnitus changes with movement, it's known to be the somatic type. Even though my tinnitus was caused by an infection in my left ear where the tinnitus was very distinct in that one ear, after about a year the tinnitus morphed into head tinnitus with somatic properties. This means that somatic tinnitus is not always caused by the musculoskeletal system but in fact tinnitus (despite cause) can be affected by the musculature system.

This means that you shouldn't conclude that your tinnitus is caused by TMJ just because it reacts to movement. I can clearly change the frequency of my tinnitus by clenching my jaw or turning my head to one side as far as it can go even though it was clearly caused by an ear infection.

My theory is that it's caused by cross-talk. When your brain develops tinnitus, neurons that are designed to fire based on auditory stimuli become susceptible to stimuli from other inputs thereby cross-talk causing the change in frequency/intensity. Similar to blowing a head gasket causing coolant to mix with the oil for lack of a better analogy.

 

What do people mean by brain buzz? Is that the physical rumbling sensation or something different

 

Wow @MrTX and @Hemda.

Your symptoms are so strikingly similar to mine (https://www.tinnitustalk.com/thread...eck-adjustment-3-weeks-ago.40098/#post-514405)

Particularly, the fact that:
(i) I have a static type of hissing
(ii) Strange ear fullness
I'm not sure whether I'm "modulating" my tinnitus, or creating another "hissing" when I contract certain neck muscles. I'm still only 3 weeks in from a chiropractic neck adjustment and am still hoping that my neck muscle contraction relating hissing in my ear is to muscle inflammation / muscle spasm / irritation of nerves.
A little sad and disappointed that you are taking so long to recover, as I'd expect any irritation of nerves to subside in a few months ...