Quick history… Developed left facial pain, tinnitus, dizziness (like imbalance and quick spins) 4yrs ago. History positive for migraine w/aura and fibromyalgia. Neuro dx migraine, started on Propranolol. Did pretty well with that. Then had a sudden severe hearing loss left ear in 2015 that recovered with steroids. Other than that, mostly good. A little over a month ago, started experiencing fluctuating tinnitus left ear, temple/ear pressure, and bad disequilibrium attacks with short spins, jelly legs, and wavy vision. Had to hold the wall to walk. Still on propranolol all this time. Went to Neuro who repeated brain mri-normal. Recommended ENT workup for possible menieres or Labs. First visit, he looks at my test info I brought, tells me possible menieres, that neuros know nothing abt balance… Gives me steroid pack which helped a lot. Had VNG test last week and follow up today. VNG is normal. He tells me I do not have menieres, that I have no ear problem whatsoever. I am like ok, so migraine. He says no, that I would have typical headache if migraine. Says he doesn’t believe in MAV. He says this is all anxiety. I ask if anxiety could cause nasal/temple pressure, tinnitus and he says maybe. He says I need psychotherapy and gave me rx for Xanax, even tho I already take klonopin (I am not filling that rx!). So I guess it’s back to the Neuro now. I’m so angry and disappointed! I fully acknowledge that anxiety may have a role in my issues, and I am actually a big proponent of therapy, but I know that’s not all that is going on here. This is my 2nd bad ENT experience… I think I’m done with that specialty lol. Anyone else find that anxiety is the sole cause of your vestibular symptoms?
My ENT experience has been bad, too. Anxiety makes MAV worse, but anxiety is not the whole story. This ENT is behind the times. This disease means we kiss a lot of frogs with medical degrees before we find a good fit. I’m done with ENTs and on my 3rd neurologist. Keep trying. Advocate for yourself.
See a neuro-otologist( I have been asked if that was a typo !!!). Finding them can be a pain, VEDA website lists some of them by zip code in the US
I did see one at Stanford when I lost my hearing 3yrs ago. At that time, he thought migraine and early menieres. But first VNG hadn’t been done yet (which was normal). This recent VNG was also normal. Neuro says migraine. I suppose I believe that since this seems like a relapse (although worse than the initial). I was just wondering if anyone found anxiety to be their cause.
Please Elaborate on lost your hearing. All of it ? Low frequency? High frequency? Both? Residual hearing any?
I have high frequency loss hence asking.
3 yrs ago, I was sitting at work. No pain no dizzies. I started experiencing fluctuating tinnitus which I’ve seen described as “fleeting tinnitus”. It was irritating, but I’ve had it off and on all my life with no consequence. Anyway, this was more intense, and then on one round of my hearing going to high pitch tinnitus and fading out, it did not come back. All I could hear was a screeching tinnitus. I had very slight hearing, but it was distorted like a blown speaker. When immediately tested at old ENT, I had “pan frequency” loss… Across all the ranges, a profound loss. Basically deaf in that ear. It’s called Sudden Sensioneural hearing loss. I was put on high dose steroids that first day, and recovered all of my hearing, except for the very highest frequency. I still have tinnitus. Worse than before the loss, but better than the time during the loss.
My first end doc wasnt that bad. She specialized more on facial surgery. She’s the one who mentioned that she thought i had vm and recommended me to a neuro which he thought it wasnt vm and thought it was a virus and just wanted me to do vrt for 3 month. My current doc is a otolaryngologists and subspecializes in neuro-otology but he’s like 90 years old i believe or maybe 80. It’s great that he’s still active instead of enjoying his retirement. He came out of retirement few years ago. I went in on my first visit initially telling the assistant that i had vm. The appointment was 2.5 hours and he did the most thorough basic exam that i ever received better than any GP and he did not even mention vm once. He was educating me how the ears work and even had real people ears in a jar. I guess those were ears of the people who had passed that donated their parts. Kind of trippy if you ask me.
Interesting…SSNHL was also one of my diagnosis. I was also put on a high dose steroids for suspected VN and i had a good one month of 0 dizziness and then it slowly came back.
This time around with dizziness, fluctuating tinnitus, but NO hearing loss, was also given steroids. I also improved dizziness with steroids but came back, but to a lesser degree. Its better than it was. But it’s just anxiety! Who knew steroids worked on anxiety? Lol!
So did he diagnose you with VM or something else?
ENTs should focus more on “NT” and leave the “E” out. They cannot diagnose with precision anything related to the ear, why even bother calling it out
I was diagnose with hydrops after the ecog test . I think it was over 50% on my right ear.
Wow. So does that make you a menieres case vs migraine? Of course I know that one could have both…
To tell you the truth i have no idea. I fit the category of lot of things. I was looking at some symptoms of POTS and fit that too but did not see imbalance as a symptom and it saids to intake high salt. If i had hydrops, then lowering your salt intake is recommended but i lost lot of weight and these past 5 days i have been eating all the crap foods I can munch on and i feel little bit better. The more I look up diseases of this kind, more confused i get. What the hell do i have? Ha. At this point, i want meds to cope with this and move on with this crap.
Unfortunately neither do the docs, and the problem is an incomplete understanding of the inner ear. So they come up with these phases of ‘flavour of the week’ which some doctors readily admit to. Once it was all Menieres, then a good proportion was PLF, now it’s ‘MAV’. IMHO the truth is probably that the real culprit is elements of all three I suspect, it’s not as if the underlying anatomy and reality has been changing!. Currently we are on the ‘MAV’ tip because people got all excited when they found that a class of medication used to treat migraine helped relieve our symptoms. In my reasonably well read opinion this was a jumping too far. Sure the meds help tremendously but they took the implication too far and doesn’t answer ‘why migraine happened in the first place’ - which is pretty obvious if you ask me, but a lot of people shy away from addressing this.
A statement I agree with.
The problem is the ‘tooling’ and the fact that the inner ear is both tiny, highly complex, and stuck behind a thick layer of bone.
Its also because ‘inner ear dysfunction’ can simply be an imbalance of fluids and this is presumably very hard to see as it’s very possible no actual part of any organ is out of place or even damaged! Until they can very finely identify mild pressure and the maybe subtle and microscopic evidence of this we are a bit stuck.
The result is we end up with a bunch of hypotheses to describe the cause of some of these conditions, instead of a definitive answer.
At least we are more certain of treatment protocols to address a significant part of the symptoms, as these can be clinical evolved and proven.
To the extent that it was originally caused by migraine, neither do I, but it DOES describe a class of condition very well, it does cause exacerbation and you can attack it and improve things.
This is not fair, poor you. Vestibular dysfunction causes anxiety as that’s how the brain is wired up! If a healthy person walks to an edge of a cliff they feel anxious for a second. Enough said. It’s not like he can blame you for feeling anxious!! Anxiety is NOT the source of your problem! (but it can exacerbate things).
I understand that a lot of Tinnitus is caused by fluid pressure in the inner ear. It sounds like you have had significant inner ear trouble and this can result in a chronic fluid imbalance. This leads to higher than normal pressure and you end up with a constellation of symptoms, which can include migraine as your brain struggles to reconcile with all the conflicting information from your bad ear and the rest of your vestibular system.
I have HF loss. This is not a result of a migraine btw (!), but migraines did come later (about a year later). I initially injured my ear. The HF loss was not immediate and initially I had no tinnitus … it came later too. I believe it is reversible, if you can do something about the pressure. (jury is out on how to deal with that one … low salt diet? high potassium? diuretic? (not great evidence) time?!)
Don’t knock ENT too much … sounds like they might have saved most of your hearing!! (although this might have happened spontaneously anyway, you may never know).
I agree. @napagirl you should try to go to an oto-neurologist, someone who will help you optimise the medication to best help the brain deal with the challenge. Propanolol is a good first try, perhaps there are other meds that can do better? Or some take a combo?
Lol! I saved my hearing back then, and I do knock that old ENT. I had read an article yrs ago abt SSNHL so I knew what it was, and knew steroids should be started quickly. I called the ENT office who said they couldn’t get me in for 3wks. I told them what I had, and that it was an emergency. They said they’d check with the Dr and get back. Called back and said they’d get me in next week. By this point I’m panicking and called Neuro. She said I had to see ENT TODAY so they can document the loss before giving high dose steroids. She said to tell them that she said to get me in today. So I called back and relayed that msg. I was given an appt later that day. I also evidently pissed the ENT off with my insistence to be seen immediately, hence my first negative ENT experience. He became a major jerk… I guess got his feathers ruffled. These two ENTs have been the absolute most arrogant Dr’s I’ve ever met!!
Some Doctors can be right blah blahs. Good for you!! Well done for being your own advocate!!
Arrogance seems an ENT trend. One I saw didn’t give me a diagnosis at all but did tell me I must have had labrynthis at some time and had probably forgotten? Why I didn’t retort in that case why was I in ENT and not the Memory Loss Clinic still beats me to this day. No, I never had any luck with ENT not surprising really I suppose, after all MAV is ‘brain’, not ‘ears, nose, throat’. Follow @GetBetter advice and go find that neuro-otologist or a migraine specialist neurologist. Trouble is with medicine it’s all so specialist. No holistic approach at all. You need a meaningful diagnosis YOU can believe in. You have to work with it and the MAV treatment process can be protracted and tedious. The diagnosis has to sit well with you or you have no chance of being positive in attitude. In your heart of hearts you know whether anxiety is the cause or not. You seem sure it isn’t so it’s really a non starter, isn’t it. Good Luck.
You’re lucky to have the hearing. My friend had the same issue two years ago and remains deaf.
Yes, my old boss got hit on the head in a basketball game and was knocked out 3 weeks before taking an internal US flight. When he took off his ear went pop and he became completely deaf in that ear. To this day, unfortunately.