Hi all, I am here to learn all I can about this disease, as my drs seem a bit useless in that regard. My history/stats: 48y/o, female. Had tinnitus start mildly 2yrs ago in left ear. Also suffering from facial/jaw pain on that side, as well as attacks of sinus pressure, eye tearing, etc. Went to allergist, who sent me to ENT because of the unilateral tinnitus. Had audiogram done 2yrs ago, as well as the nasoscope. All normal. Things slowly got worse, and I was suffering cluster-like headaches on the left side with mostly imbalance, not vertigo. Back to allergist, who says probably TMJ and Vestibular Migraine (I have a personal and family history of classic migraine, and atypical migraine). Referral to Neurologist for Migraine preventative meds. At this point (last Dec), I get almost constant dizziness like walking on a boat. Had one 2 second episode of true spinning vertigo. Neuro trials me on Nortryptaline, which make me even dizzier. I also go back to ENT since tinnitus has never quit in left ear, and is ringing loudly during my "episodes". Another hearing test is normal, as is a positioning test for BPPV. He also feels this is migraine related, and routes me back to neuro. Neuro does brain MRI (without contrast) since everything is happening on the left, and it is normal. I am then put on Propranolol as a migraine preventative. After several weeks on the drug and titrating up, I have no more dizziness. I was also doing the migraine diet- eliminating preservatives, anything processed, etc, etc. So, I am thinking all is great now.... feeling pretty good. Still tinnitus in that left ear, but not as loud or high pitched. And the "sinus" attacks have left. But then out of the blue, I come down with what they call Sudden Sensoneural Hearing Loss two weeks ago, in that left ear. I was literally just sitting there, my ear starts ringing loudly and goes muffled, and I can't hear anything. Back to the ENT, where audiogram showed moderate SSNHL in left ear, right ear normal. I had no dizziness or vertigo. I was given a burst pack of Prednisone. I also decided to travel a bit to see a teaching hospital for second opinion. But 3 days after the event, my hearing came back. I was/am ~80% of normal. Still saw second opinion. That dr. recommended MRI with Gad to rule out acoustic neuroma, although he doesn't think I have that. He said based on history, he thinks this is "Cochlear Hydrops" an atypical or early form of Meniere's. He recommended low salt diet, and follow up with ENT. Well, my ENT is now saying I don't need an MRI, and next up is some test called an ENG. So that's my story! Would appreciate any insight or advice with this... Again, no dizziness with the SSNHL, but I am feeling a little "floaty" and off balance now. Don't know if it is just stress of part of the ear thing.
Never had the headaches or sinus pain/pressure - That I recall - but I have similar Meniere's like symptoms. (Hearing loss in one ear, one bad dizzy spell, loud tinnitus compared to the other ear, dizzy often but not really an attack ...) Just posted my story yesterday at http://menieres.org/talk/index.php?topic=1144.0
James, Really? I am very surprised to hear that migraine could cause SSNHL. I did find a recent study saying that those with migraine were twice as likely to suffer ssnhl, but the link was though to be vascular risk factors for both, not a direct causal link. Funny- both Drs who evaluated my ssnhl know I have a history of atypical migraine and MAV. Both didn't mention migraine as a cause. They said maybe a virus or early Menieres. My next test is a VNG.
I've never had a migraine that I know of and from what people have told me .... I'd know it. I think one thing that is often missed is that someone may have multiple problems. We tend to concentrate on, "I have X symptoms, what is the one cause" in some cases. In some cases people could have migraines causing one thing, allergies causing two more, and some unknown causing the last two.
How are they treating you for TMJD? If you're looking into alternative treatments I suggest upper cervical care or NUCCA.
Mustang89, I have a splint made by a dentist who specializes in TMDD. I was referred to him by my medical dr., and he is supposedly not a hack in this area. Additionally, I am not to chew too much, no gum, no opening mouth wide, etc, etc. I am supposed to go for some special tomography of the jaw, but this sudden hearing loss cropped up and am dealing with that at the moment. I will have the tomography in a few weeks, I think. Physical therapy is another option he and my neuro have discussed, and the person is out of town. I haven't even considered that at this time due to the excessive amount of work I have already missed due to Migraine, MAV, and SSNHL. So, i guess the only thing I am doing for the TMDD is the splint and avoiding chewy things.