Thanks. Paxil does nothing for me. (Personal experience and genetic testing.) While I doubt anxiety is the cause of my issues, it never helps. Not a lot of good alternatives for Paxil. (that will work with my resistant brain chemistry)
Same! My left ear, the one that had hearing loss, still has tinnitus. Same side as migraines and tmj. Also phys therapist now thinks occipital neuralgia. If I could just cut off the left side of my headā¦
I fit number 3 the bestā¦
Fortunately I was diagnosed with VM like 4 or 5 yrs ago. Neuro is pretty understanding. Itās been under great control with propranolol and diet. Which is why Neuro thought inner ear with this recent attack. And the dizziness was the major symptom this time vs facial pressure/pain like when I was first diagnosed. But vng normal, so ent says inner ear fine, must be anxiety. Back to Neuro I goā¦
Definitely a 1. though it did come on then worsen for 6 month before starting a very slow but chaotic improvement.
Actually optimistic about ear symptoms as these have improved a lot since the beginning. Canāt see why improvement wouldnāt continue, as surely a total mess at beginning, hard to see how that would improve, but it did! (used to get loads of sound distortion on train, very sensitive to sound, pressure in ear when driving, much worse tinnitus when bending over, gurgling fluid leak in morning, sound of the sea when getting up, all gone - now just drips very slightly)
Yes, I have bilateral hearing loss in the upper ranges. When I told my neurologist he said welcome to being 60! Lol he said thatās very common because of my age and didnāt think it was related to my migraines.
I have all those ear symptoms too beginning when all this started abt 5yrs ago. They wax and waneā¦ Had gone away for the most part until this relapse or whatever in late March. All in my left ear.
It sucks! 
Ahh. Yes, your options are probably limited depending on where you are and how far youāre able to travel. I have friends who live in a small town in southwestern CO and they travel to Boulder once a year for some of their medical appointments.
I did find this place in Englewood, and the doctor (a neuro-otologist) who sounds like the best bet is J. Eric Lupo, MD. He has an engineering degree (I do, too) which means he may use a more logical approach to problem solving:
https://www.rockymountainearcenter.com/about-us/professionals/
Sorry to hear about your problems. As you noted, lots on this forum have similar or related issues.
I would say to never go back to that ENT again - but I actually have a pretty good ENT that has helped a lot and also knows her limitations and so referred me to other specialist. But I still see her and she is a good sounding board for my concerns including my frustrations with the specialists. The biggest issue with having a condition with these types of symptoms is that I do not think the science is great and even the reasonable science is not widely known by most doctors whether Neuro or ENT or other.
Some will say to not over-focus on this and spend all your time trying to figure it out - but I am a firm believer in being your own advocate and being an informed patient. You can get some good info on this forum and a mix of opinions. I have some strong opinions but I also know my limitations and have tried to move forward with the treatment plans given me.
So one thought for you is the facial pain might have a connection to ātrigeminal neuralgiaā (TN) This would be diagnosed by doing a special MRI looking at your Trigeminal nerve which is a special one most MRI places donāt know how to do. I had mine done at Hopkins which is where my specialist docs are. In my case it clearly showed an enlarged artery on my bad side but not enough detail to see if it was the problem. Normally if you have TN there are a lot of facial issues as this nerve also services your face so you have pain and tics on your face.
For me, the ENG showed weakness, but I do think there are other tests that are better to show issues with the vestibular system. my vHIT test results stated severe weakness on the left side, but my Neuro still acts like my vestibular system is ok and its just all in my head. Not happy with any of my neuros but they at least can give you a set of drugs to try which may help with the symptoms.
I think the Anxiety diagnoses or PPPD (another āits all in your headā diagnosis) are BS. Yes you will have some anxiety as your dizzy symptoms are having a major affect on your life, but I donāt think they are the original cause. And for that matter, I am of the opinion for many MAV patients, the vestibular system issues caused the migrain symptoms and not the other way around. I never had any migraine symptoms until after my last attack. I think it is tied to your brain struggling to account for a screwed up balance system.
For me, I am of the opinion that my issue is not purely a nerve related one, but the fact that there is an enlarged artery not far from all the balance organs leads me to believe that there may be vascular extensions of that artery extending into that area and being part of the actual problem. Not enough evidence to go do brain surgery yet so Iām working on lots of the standard things to try to be better. I did see a very interesting case study of a man with similar symptoms that they found during surgery (thought they saw a growth so opened him up) to have vascular outgrown surrounding his balance organs and upon moving them, he was cured. So I have some hope but not ready to push for that surgery option.
The steroid comments are interesting. My ENT has given me high dose courses of steroids after each of my major attacks (one 8 hours, and the last was 3 days). I felt they helped a lot and the last time I was getting worse again as the dose got smaller, so she upped the dose again and dragged it out longer which helped a lot. I do believe that there is a physical event (like a tear or fistula as they call it) somewhere in the hearing organ that allows liquids within to mix with those on the outside (totally different composition and electrical charges as part of the organ function). This ties to how I feel in an attack - I have high pressure in my ear and then a release like something broke (I though maybe blood event when it first happened) and I immediately lose all ability to stand and everything is spinning. My Neuro and Neurotologist stated there was no reason for steroids, but my experience is that they help greatly. I think they are just convinced that it is something different (in my head) and see no reason for it.
I was diagnosed with Meniers initially and the experts would say atypical menieres because I donāt have low frequency hearing loss. Meniers patients also seem to only have issues during the attacks with no significant issues between attacks but I think this is just a group of symptoms and on the details of your exact condition you may or may not have low frequency loss. In either case, I do think it is some form of Hydrops (endolymphatic hydrops) which is pressure and fluid issues within the balance and hearing organs. Some in the profession say that Meniers is Hydrops.
One issue with this -tied to the the first thing I read abut Menieres. Its progressive and incurable. I hope the latter is not true, but my experience with whatever I have is that I definitely progressed. Started with short episodes progressing to much longer ones after which my steady state condition was progressively worse.
My primary goal is to avoid attacks as I think these make me worse long term. I do think the lower salt diet and diuretic (triampterene/HCTZ) have helped me to not have attacks although I do still occasionally feel an attack coming on and am able to stop it by sitting quietly drinking water and taking valium. Valium is the only drug that has helped me in an attack and I carry it with me at all times as well as Zofran that melts under your tongue and helps you to not throw up the valium. I keep them in a contact lense case so it is protected and not so big in my pocket. You should talk to your next ENT to see if they would advise the diuretic to help you avoid attacks. Consider a lower salt diet and drink lots of water.
You can also see lots of info on here about the Migraine diet which may help you. I did that diet very strictly for several months with no improvement, but other people swear by it. I do think that anything that takes months to work could also just be coincidence that you got better over time and not because of the diet or drug you are trying.
Look for a doctor or group that has experience with menierās/MAV/Trigeminal Neuralgia type stuff. They may not be perfect but at least will be at the state of the art in diagnosis and treatment even if it is not that great yet.
Good Luck,
Dave
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Dave, thank you for your response! You hit on a lot of points that I myself have wondered about and researched.
I read somewhere that hydrops exists in asymptomatic people. I also read somewhere that vestibular neuronitis (which seemed most likely symptom-wise to have hit me recently) is no longer considered to be a virus, and if you get it twice, they then call it menieres. Who knows! Itās frustrating when they donāt really know whatās going on, and keep theorizing.
I have read abt trigeminal neuralgia, and while I donāt fit the classic definition, I think thereās definitely something going on with my trigeminal nerve. Many of my symptoms are very very similar to cluster headaches, but without the severe incapacitating pain. I recently visited a chiropractor at the suggestion of my phys therapist. I was hesitant, but will try anything. I got some major, major relief from the first adjustment- like almost a high feeling from being out of pain. Then, a different chiro was there for my recent visit, and the adjustment he did of C3 instantly started my left sided symptoms up. Fortunately it calmed down after a few days, and my visit next week is to the original Dr. But the main thing to me was that manipulation of my NECK instantly caused the original ongoing symptoms to appearā¦ Right down to the sinus pain, eye tearing, eye twitching, louder tinnitus (but no dizzies). My neck has hurt constantly for several years, radiating into my shoulder and arm. So Iām thinking of asking the Neuro for a neck MRI. Iām just so convinced that itās somehow linked.
When itās at its worst, I get a horrible head rush/head pressure when standing up. Itās not related to blood pressure or heartrate, Iāve checked those and so has the Dr. They have no idea what it is.
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Bit off topic but this comment really resonated with me
Just maybe being predisposed to being ādetail orientedā shares the same gene as the predisposition to migraine but Iād lay bets it applies to most on here, me included. Perhaps that would account for the large numbers of long term computer users on here.
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My parents, husband, boss and coworkers say Iām a control freak and yesā¦. When their being kind, they would call me ādetail orientedā 
I do wonder if that is a common characteristic we MAVāers have?
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Iād lay money on it. Iāve yet to meet a āDevil may careā, lazy layabout type migraineur in my personal life. Every one I ever remember was a slightly uptight, meticulous to detail, conscientious, extremely dedicated and hardworking person and most were under constant pressure from familial sources for some reason or another too. Just before reading your response glancing at the newspaper over my breakfast cereal bowl I read a psychiatrist writing on the curse of people who have a high IQ in respect to them being able to thoroughly relax and enjoy life. Most of the migraineurs have known probably werenāt that short of being that way inclined too. And in the past Iāve read many references to the A type personality and migraine links. So I think itās a pretty safe bet that itās a common characteristic Renee.
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