I wrote a lot about it in my intro post. I seem to have somatic tinnitus. Can modulate it even with my eyes or by tweaking my left wrist/hand.
Over the summer I started hearing the conk shell air sound, but didn't pay much attention to it. What I really noticed first was a meandering high pitch frequency about 5 weeks ago. I wasn't sure exactly what modulated it. Sometimes it appeared to move similar to my heartbeat, but not exactly. Often it's like a pulsing that shimmers in the back of my head, usually more associated with the left ear than right. When that started I also had a period of time where everything was super loud (hyperacusis). When the tinnitus gets louder, it becomes more like the whine of an old tv that's turned on without any content. Except it changes and wobbles. I also began to notice a faint low pitch hum as well, almost like a generator running in the distance, which often has a typewriter like effect to it, and some weird harmonics in between the tones. I also have heard weird beeping/buzzing in reaction to other sounds like a fan running or white noise sometimes (dysacusis I guess?).
I had a hearing test, and my hearing is great. Eventually I began to notice I could change the pitch with my jaw and head. Not only that, I realized I can change the pitch with my eye movements/eyebrows/tongue, and even my left hand/wrist or by pushing on my head/neck in a lot of spots. A doctor at the ER (where I went for anxiety due to tinnitus) pointed out that he thinks I have a pinched nerve due to the modulation.
The ENT I first went to hadn't even heard of somatic tinnitus. I don't seem to really have TMJ, though my dentist has been suspicious that I've been clenching due to teeth sensitivity on the left side in the last year. I did have some sort of neck injury about a year ago that has been bothering me roughly in the same timeframe as this. (MRI showed a small bulge on the C5 that was limiting my range of movement.) X-Rays a few days ago looked good. I'm getting the MRI updated soon, and going to see an ENT who specializes in hearing, but it seems like lots of folks don't know about Somatic tinnitus or how to try and treat it.
In the meantime I got back on an SSRI to try and address the anxiety issue (though I know they can be bad for tinnitus, I needed something. Cymbalta seems to be one of the better ones.) I've started going to a chiropractor, who said my neck and jaw muscles were super tight. I guess I should see an upper cervical chiro?
Other details leading up to this starting, I was taking klonopin 0.5mg roughly every other day for 3 weeks leading up to this (the docs think there's no way I had withdrawal). I also did Ketamine sessions leading up to this, though the last one was separated by nearly a week from this starting. My eustachian tubes have also been problematic, primarily on the same side as the high pitched tinnitus, for awhile now. I have GERD and so sleep on my left side, and I wonder if that's a problem here.
My neck is sore, and that's hopefully addressable and the core of the problem. Or maybe my jaw even though it's not super painful. Or maybe it will improve with my anxiety. It does seem to wax and wane sometimes, and I'm not entirely sure why. Usually if it's going to be quieter, it's in the morning.
I'm struggling though, and looking for any advice. I don't know why I suddenly have this, and I'm worried it's going to keep getting worse.
They want me to see a physical therapist for my neck. I'm seeing the ENT hearing specialist. I feel like if the tinnitus was at least steady I could habituate easier.
What do I do? Who do I go see? I saw a TMJ specialist, but those bite guards were $2400. Is that normal? I saw someone saying ETD is the true issue. There's a guy around here who dilates them. Should I do that? Acupuncture? Neurologist?
Please help.
If you place your hand at the back of your head, where all the nerve endings are, then move your eyes far right and left, you can feel movement. Back there are all nerve endings.
You should do a thorough ETD endoscopy with recorded video, read my thread. I've booked for one too. Acupuncture is laughable, but an actually good physiotherapist can in fact release knots with needles. He will pinch the knot, insert the needle sideways, you should feel little pain, then a twitch must occur. If you feel heat, it means he is pressing on a nerve so tell him and he will withdraw. The needles are sort of round at the edge so they don't pierce nerves, they will just push them.
TMJ does not have to be the issue. You can have a normal looking bite but the position can be faulty (read thread).
There is no way we will ever find the exact nerve causing all this. It's not possible.
The two major causes IMO and after reading a lot from
@Greg Sacramento and searching myself, are either the atlas OR your Eustachian tubes. We can see this with just logic. ETD means an ear isn't healthy, healthy ears don't get tinnitus and ETD itself causes tinnitus and ETD being fixed cures tinnitus. Lots of stories here. The atlas is more complicated. There are a lot of muscles there, you can loosen them sure but you have to check where exactly you're stiff and where you're over-loose there. I have seen necks that are just ridiculously bad, no tinnitus. If you see anyone over 40, their necks are messed up. However... I think that it can occur in relation to the jaw. It's anatomical. I don't know how exactly, if I did I would be rich. I do think that TENSION plays a role and I'll test this the following week. It isn't just tension in the neck. It's how the head (through the jaw) and the neck work TOGETHER. That's my thoughts. Why? Because if you turn right, you move both your head in relation to your neck. If you clench, you move your jaw in relation to your neck.
I once thought it may be the vertebrae, the small gap there where veins and nerves pass through, yes? So, one gets pinched or irritated and I get tinnitus. If that's the case, all you can do is decompression table and strengthen the neck after you loosen the muscles. Yeah but there are necks out there mate that if you see them and read their MRIs you'll say "nvm I'm good". They don't have tinnitus. Even if it IS the neck, we will never find it. It's literally impossible. All we can do is trial & error.
If someone gets a reduction in his tinnitus by 80% or completely gone through physiotherapy, good. What exactly did happen? We have no data. If we had a thousand people with MRIs doing the same physio, we may have known.
By logic, the root cause of tinnitus has to be close to the ear. Or as close as possible, we can't go backwards. So, fix your ETD first, restore their function. If you do and that doesn't solve tinnitus, move forward. The problem is ETD can be FROM ALL THOSE MENTIONED, jaw, muscles, ligaments, neck (front and back), so since it's neck it's also upper back etc.
This is why I think one must focus on treating various areas with the GOAL to fix ETD... because think about this too: those people who claim reduction in their somatic tinnitus through physiotherapy, how many also experienced "PRESSURE RELIEF IN THE EARS"? I'll tell you, all of them. The few videos online with testimonials, also mention that aural fullness / ear pressure was either gone or reduced. Coincidentally, those few who claimed "gone", said tinnitus is gone too.
In conclusion...
A malfunction to the ear creates tinnitus. In my opinion Eustachian tube dysfunction creating pressure in the middle ear, failing to equalize normally. Remember James Bond old movie with Timothy Dalton, the guy inside the pressure tank? What is the one thing that occurs? A high-pitch tone, same as ours, before the guy explodes. Our middle ear is a tank, pressure rises, tinnitus rises. Pressure fails to equalize, tinnitus begins. Simple.
So, now you have a malfunctioning ear that has a constant environment where tinnitus lies inside. We have ruled out cochlear damage, tumors, Ménière, keratin buildup, wax buildup or tympanic membrane injury, hearing is perfectly normal. So, back to pressure issues.
Now, you have a box, tank, whatever you wanna call it... it is the middle ear cavity. Inside, lies tinnitus (not exactly but let's simplify it). Now, that cavity is connected (directly or indirectly) with muscles and nerves. Those muscles are tensor tympani connecting to palatini muscle connecting to everything else. The nerves are pretty much all you can think of, one connects to another (sort of). As a result, one can modulate them in a variety of ways and volumes by messing with the muscles and nerves, creating tension. That's it. Like what, a guy who leg presses a thousand pounds doesn't create tension? Why doesn't he have tinnitus? Or why doesn't his somatic tinnitus go to insane levels while doing the lift?
Because the modulation is temporary. Try modulating your tinnitus by shifting your head right and once it increases, hold it there. It will dissipate shortly after, while you're still keeping the same shifted position. This reminds me of pre-tinnitus era, when I would get my now permanent one and I would be able to make it dissipate completely by plucking and releasing my ear a few times fast (pushing the tragus to close my ear). What I believe was occurring back then was ETD and I was able to sort of negate the pressure difference. Probably the pressure difference between outer and middle ear was smaller. Who knows. The point is, ETD - from a mechanical cause at least - starts slow. You can't detect it.
A final point is there isn't a single person out there with somatic tinnitus (no hearing loss, no serious ear disease, no trauma) who doesn't have ETD prior to tinnitus onset. If that isn't enough proof I don't know what is.
There are also cases of PET, constantly open Eustachian tubes, who experience the different type seashell sounds and then they alter their tubes and get high pitch tinnitus. What is the only thing they changed? Their neck is the same, their jaw is the same, their nerves are the same. The one thing they changed was their middle ear pressure.
I will personally do my best to treat mine and hopefully can prove these rumblings aren't in vein. If it is indeed a tiny nerve ending somewhere in some vertebrae, then we can all just habituate and move on right now, plus we are definitely going to get worse in the future. However... I know personally a lot of people who have no hearing loss and somatic tinnitus for decades. As their neck worsen, their tinnitus does not. However, a single sinus cold gets their tinnitus to a massive CONSTANT spike, until the cold is resolved. So, the additional pressure and probably fluid buildup, leads to a worsening tinnitus. Their neck didn't change. Need more proof?
Just to wrap this up, think of tinnitus as hair loss. I had it, lost my hair. Back when I was trying to find the cause and cure of hair loss, EVERYTHING was modulating it. Diet, posture, blood flow, hormones, the sun, you name it it's there. It's the same with every "no cause no cure" condition. Modulation means nothing, it's circumstantial. Find the root cause, you'll find relief.
Plus, not to mention wrong diagnosis. People have cholesteatomas and no ENT sees it. Others have infections slowly creeping towards their ear. Others have eardrum past injuries, others have noise or drug induced tinnitus. It's chaos. So someone may have no ETD but have messed up his ears some other way, unrelated to it.