Hi Sam, I don't have any real advice for you, except to say that (as you've probably figured out) most doctors are not interested in solving mysteries, or if they ARE interested, they don't have the time to do it.
They are interested in relieving severe or life-altering symptoms and in fixing dangerous things, then sending you on your way. That's it.
We can come up with all kinds of theories for our own mysteries (of which I have quite a few), and a doctor might listen to them, but explanations, speculations, and certainly interventions for (what seem to them) relatively minor things that don't threaten life, limb, eyesight, hearing, or other important functions are highly unlikely to be undertaken.
Have you tried writing to doctors at some of the more well-known ear institutes, e.g., "Mass Eye & Ear" or the House Ear Clinic in LA?
One of my mysteries is paroxysmal episodes of clicking in my left ear simultaneous with jabs of pressure/pain on the prominent bone behind the ear, episodes that last usually 5-30 seconds. I developed this (along with a whole raft of strange neurological and ENT symptoms) after a sudden severe hearing loss in that ear when I sneezed hard.
I mentioned these clicking/pain episodes to an oto-neurologist, the biggest type of specialist at the intersection of neurology and ENT, and he just shrugged and said "I don't know what that is." Of course he had already been seeing me for countless other symptoms--dizziness, hearing loss, paresthesias, and some things suggestive of MS--and he had already begun to conclude I was a hypochondriac. I also mentioned these episodes to some other ear specialists, but no one was interested or had anything to say about them.
Nor about the episodes of benign positional vertigo in which the nystagmus was accompanied by apparent stapedial spasms in the OPPOSITE ear, which seems to be unheard-of in BPPV.
My theory is that this is all some bad wiring in my brainstem, which seems plausible since my auditory evoked potentials are highly abnormal bilaterally, even though my hearing is perfect in my right ear.
I am not an expert in this area or even a scientist, but my understanding is that some of the reflexes involving the ear cross over in the brainstem--for example the acoustic reflex; a loud sound in one ear causes the protective reflex to occur in both ears, if I have that right.
You may not ever find a resolution to this. I have had mysterious symptoms for 10 years and am no closer to finding answers (although I gave up trying years ago!). But good luck in your attempts. You never know.
Have you read about inner ear concussion (which some ENT docs subscribe to, e.g., the famous Dr. Epley)? As you probably know, the inner ear is very sensitive to damage, and can develop secondary endolymphatic hydrops after an injury, which may make one sensitive to pressure changes.
Did you ask your audiologist about your theories?
One thing I would suggest is not to explain your theories to any doctor you see for this problem...they will label you obsessive immediately.....if you have theories, find a doctor who will discover them for themselves, if you had to guide a surgeon, would you feel confident in this person operating on you?
One thing I know for sure is that you will only complicate your appointments and the more doctors you visit, the harder your diagnosis and treatment will be....many doctors have a hard time knowing they are seeing a colleagues patient...and are reluctant to give any valuable input....knowing you will just be put off and move on...this has happened to me so I am giving you first hand advice....
the other issue I would address is your hearing loss....if there is none, then don't invite disaster....if you have sustained injury and are left with some sensations you cannot explain try to let that suffice...the body in general is more fragile than we think and when we age, some age quicker, some age worse, but we all age and things such as hearing,and sight change....my suggestion is to search for the best hearing aid that will allow for no more damage to be done to any nerves....I understand that a hearing aid will not reverse damage but can possibly stop damage from escalating too fast.....
hope you find a good doctor to treat your symptoms, but remember they are all human and don't know it all.....I don't think our lifetime will ever know another Einstein......
Sam, I had tensor tympani syndrome and stapedial myoclonus in both ears. The problem was enough for me to go nuts. The solution. I had both the tensor tympani tendon and the stapedial muscles cut in both ears.
No more fluttering. No more problems with results of noises, changes in pressure, movement.
Cured. Seek out Dr. Wiet in Hinsdale, IL. He did my surgery. No regrets. No loss of hearing. No problems from the surgery. Only doctor who listened to me after 7 years of loser doctors telling me to not use Q-tips.
i cured myself of tensor tympani muscle spasm syndrome. Plus meniere's. i was ready for surgery, i was going out of my mind. the volume of the noise i was hearing 24 hours a day 7 days a week, and the vibration was so severe it was like a bird flying against my eardrum day and night, i could barely sleep for 16 weeks. I thought my life was over. every 5-10 days it would slow down and stop for a few hours or a day before starting again. it came on during a suspected severe bout of Meniere's Disease, with loud tinnitus, blockage and dizziness. I had some hearing loss, and roaring tinnitus. then the tensor tympani muscle went into spasm. it made a noise so loud i was prescribed drugs to keep me from panicking and i couldnot sleep. i realised as you say, that the specialists just give you drugs and offer surgery and psychotherapy to deal with the noise. i tried cranial sacral therapy (this was the only thing that did help) and it seems that a misaligned jaw and teeth can contribute to the problem which i am rectifying with a plate i sleep with, massage of the tense muscles around face, neck and jaw helped, but didnt cure, magnesium oxide to help relax muscles, chinese herbs acupuncture etc. But nothing stopped the vibration and buzzing. i believed that even though i have a weakness in my left ear, some damage there (i have BPPV) there must be a reason the body was doing this. finally i saw an Ayurvedic doctor. She immediately knew what i had and told me i had a severe Vata imbalance, which often ends up in the head and ears, and if you have damage, an injury, or a historic weakness in the ENT area, it will end up there. I started on their famous treatments, medicated oil massages, (oiling the body daily and head, reduces the Vata, medicated oils sniffed up the nose and into sinuses and eustacian tubes, with steam and massage of sinuses, and internal herbal medicine, plus diet changes, and very fast, after 16 weeks of living hell, tinnitus, sleepless nights and despair, it stopped. all i can say is that i was a very severe case, and that by using a whole body approach, not just an ear approach, and getting healthy, rectifying the imbalances in your entire system, the body will heal itself. it is a horrific problem, and i dont blame anyone for having surgery, I would have eventually, but that still isnt addressing the root cause of the problem and why we got this in the first place. By the way, research shows that ear wax problems are caused by an Omega 3 and 6 deficiency so read up and address your nutrition, reduce sugar, salt, alcohol and sugar. and find an Ayurvedic practitioner (its the 5000 yr old Indian wisdom on health) good luck all.
I have constant fluttering and movement in my ear and it is so bad that I have a hard time sleeping. I am now starting to get depressed. I am on Klonopin and that help but makes me very tired and depressed. I am considering the surgery. Was it painful. Did you have any symptoms or changes in your hearing?
Thanks for your help
Who was the doctor that performed your ear surgery for TTS and SM?
Hello. Hope you are still a member. My symptoms, of abt 20 years, are much the same as yours. Left ear. It feels like a syringe is placed in my ear and inflated and deflated. Boom, boom. Very distracting, so much that I have to leave the room if in the presence of others. Can't hear as well when it is going on. Starts with yawning, going to sleep, with a laugh, etc. Mostly in the evening. I am a healthcare professional, have read all there is to read. Have seen many physicians, had many tests, etc. The dumbest thing a physician has said was, "The reason you can hear it better at night is because it is quiet then." And he is an ENT.
A few years ago, I discovered (being curious and willing to try pretty much anything), that a low pitched ongoing, somewhat loud sound actually STOPS the throbbing, and I feel like a new person. Examples are a sound soother, a motor, such as an exhaust fan, plain ole static on a radio, etc. Often it starts again, so I turn whatever on again and it stops. Occasionally, it takes a while, and I have to turn it up real loud.
And I have finally found a physician (neuro otologist, I think he is called) who has helped. It is a myoclonus of some sort. We started by taking oxcarbazephine 300 mg, BID. It really helped for a while, but it has come back somewhat. We will try other stuff as time goes by. Will post updates.