Update on symptoms...possible TMJ?

  • Had symptoms first gradually creep up maybe 4 years ago, maybe caused by concussions

  • a weekend music festival and it triggered them again, this time it maybe worse.

  • Symptoms get dramatically worse at night, in a busy place or when driving.

  • year of vision therapy with little success. currently on 1st month of vestibular therapy

  • seen chiropractor, physiotherapist, massage therapist, neurologist, ENT, and optometrist.

  • MRI and CAT scan of brain showed brain was all clear.

  • I have an MRI of my ear coming up soon. a

Symptoms Include:

  • TInnitus both constant and pulsatile
  • Unsteady vision
  • Difficulty seeing in the dark
  • Popping/ crackling in ears when looking side to side, or when i hear loud noises
  • Whooshing sound when bending over
  • Almost painful when hearing loud noises (like putting the dishes away)
    Which lead to:
  • panic attacks
  • mental fog
  • fatigue


  • The popping in the ears when rotating my head or opening my jaw have decreased to more of a cracking/grinding sound,
  • Tinnitus gets louder when swallowing, opening, or clenching jaw. This and frequent jaw pain are leading me to investigate possible TMJ issues
  • I find that my symptoms are improved alot if i listen to low frequency beats when i do stuff around the house or go in the car

New Question:

  • If I had these exact same symptoms 3 years ago would the fistula or other damage healed by itself and then I ‘re-injured’ it at the music festival? or do these types of issues typically not heal (looking to rule out possibilities)

TMJ as a source of dizziness? That’s very surprising. I doubt it. I have had TMJ and it has all but resolved. Little change in my tinnitus or imbalance.

There are one or two links I get with my jaw though. The fluid leakage from my ear seems to dry periodically in my Eustachian tube and this residue sometimes ‘cracks’ when I move my jaw especially when I open wide.

When I clench my jaw I get an increase in tinnitus. This is I believe because the endolymph portion of your inner ear has swollen and reduced the space for the hairs to operate. When you clench your jaw you compress the space a little further momentarily. This may have happened before but there was tolerance for a little compression in the ear as the Perilymph space was bigger. Now that you have SEH, some of the hairs are stimulated and you get a slight increase in tinnitus momentarily. This mechanism also probably explains the pulsative tinnitus. If one can reverse the SEH presumably this behaviour would go away. I used to get the same effect when bending down. No longer. Has the SEH decreased a bit?

Secondary Hydrops (aka MAV?) can develop during the life of a fistula and probably comes to a head when the fistula is close to healing at which point the pressure build up will be getting higher and this may start to cause vertigo and other weird sensations. The music festival timing might have been coincidental but I guess loud noises might have precipitated the first symptoms (coughing can precipitate a vertigo attack for me, loud music might also do the same?)

Btw, I’ll warn you - I didn’t find VRT helpful. It’s because this condition is so variable the brain has a hard time compensating. Just takes a little longer … but don’t think the VRT helped much, just time and normal activity. Your mileage may vary, see how you go …

I went to a PT who said that TMJ issues can be a source of dizziness. It can also trigger migraines. Basically the SCM muscle runs from right below the ear all the way to the neck and is involved with the jaw. When that muscle is tight it can cause dizziness and pain right below the ears. You can google the SCM muscle and headaches together to see some images and read a better description of what happens.

Also, for headaches, my former neurologist recommended I try to get the dizziness under control, but one of the later goals for me on her “plan” was to eventually see a TMJ specialist, tell them what I’ve already tried (have worn a correcting bite guard at night and have had teeth filed down to realign the bite. I don’t recommend the latter as your teeth don’t grow back and if the problem is in the joint like mine it won’t fix it) and then see what the next options are. She said some of my headaches could definitely be triggered by TMJ issues. Basically there’s something going on with my right TMJ as every time my mouth opens it is pulled to the left as the left TMJ is stronger.

Hope this helps!

Hope it works for you Jesse. I can agree with some TMJ being some source perhaps after eating or if grind your teeth all day. Some medication side effects do that as well. I’m a dentist and I have some TMJ as we all do in age so I can say that in my professional opinion I say not my problem. More people would have it.
I supppse if you’ve been wearing I’ll fitting dentures. Have extreme bruxism or poor restorations that can be a factor. If it goes after adjustments then good for you.
The SCM I know causes problems but everyday for some people 20 years?
I’m more inclined to think true vertigo is an inner ear problem.

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medication, therapies and surgical treatments are available these day… some time symptoms disappears without treatment but if persists then, must consult to doctor…

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@jap4jesus Yes, I’m not suggesting TMJ is a sole cause, but I think for some people it could be a significant contributing factor. My dentist hasn’t seen any evidence of grinding on my teeth in the past. My right TMJ seems to be damaged somehow as my jaw opens and immediately pulls to the left, as if the left joint is stronger. It’s always crooked and I can always feel a mild click. These past 6 days I’ve had the worst jaw pain I’ve ever had for the longest time period without relief, as well as ear pain but some of that I think is below the ear and in the muscle associated with the jaw. Unfortunately I can only lay to sleep on that side as I get severe vertigo lying on the other side, so I feel like every night I damage it further by lying on the sore side.

As far as inner ear issues, I really haven’t had any ear pressure, pain, or fullness until the past 1.5 years or so, after dealing with VM for 6.5 years now. Nothing was found to be wrong with my inner ear from all the extensive testing I got done at Johns Hopkins Vestibular clinic. I just wish I
knew more of what was triggering mine so I could know how to try to combat it. I think it’s all related. Also all a mess!

Jess how strictly do you follow ‘the diet’? Have you noticed any improvement?

@turnitaround I didn’t exactly do the total elimination diet on here, as doctors never suggested it to me as this all first started. At one point I was told to cut out chocolate and cheese, and I never noticed a difference there, in fact felt worse. As far as other sources of caffeine beyond chocolate, I don’t drink coffee or soda or any tea besides herbal decaf (and that is rare) and also don’t drink alcohol. I eventually did try, discovered by accident, eliminating nitrates/ites from my diet, and that did reduce some of the dizziness sensations, but still not nearly enough to make me functional. I tried to add them back in about 2 months later and felt horribly worse. So that elimination was a nice discovery. I have done copious journaling of my diet and symptoms and haven’t seen anything else significant, but I realize that is difficult. I do know that eating fried foods seem to give me regular headaches, as well as iced tea, so I’ve cut them out. It doesn’t seem like any other foods are making a difference. My symptoms used to wax and wane throughout the week or even day, but in the past 2 weeks I’ve felt the exact same way every day all day long. Yet another evolving part of this monster.