The Vestibular Migraine Community

You're not going to believe this!


#1

So, as you know, I have had BPPV which started in April. I was unaware of what it was when I had it, so I went 2.5 months walking around with imbalance and severe dizzy spells during certain positions.

I believe the chiropractor I went to see made it worse because they laid me back and said, well, it seems you don’t have an inner ear problem. This was, in hindsight, terrible medicine because one must do the “Epley Maneuver” to rule out nystagmus related to BPPV, not just lay the person back. So, she then proceeded to massage my upper neck with a vibrating gadget concluding my dizziness was a result vertebrae insufficiency (another whack diagnoses as I am 32 and have no history of obesity, plaque buildup, etc.) The vibration must have further dispersed the crystals in my inner ear because my dizziness/BPPV got extremely debilitating. I ended up in the ER where they finally diagnosed me with BPPV and gave me an Epley worksheet.

I found the Epley wasn’t working, so I did the half summersault Maneuver, and that cleared the spinning, but the residual off-balance feeling lingered. Before this all started though, I had an increase in headaches which felt like they were originating from my left ear which also felt clogged. This was most-likely because I got over a 3-month bout of upper respiratory cold and Eustachian tubes couldn’t drain properly (I still have it). I have gone for three separate hearing tests, all of which came back normal which also make me stumped over the eusthacian tube dysfunction validity.

ENT said it probably was a weird case of BPPV with some residual symptoms and to “keep making myself dizzy.” GREAT.

So some of my symptoms are off balance feeling, swaying, severe anxiety over all of this which I believe makes anything residual worse. I recently went on vacation which decreased a lot of my symptoms and also confirmed to me that my ears weren’t in that much distress because of the altitude survival.

So, when I get back from vacation, the ear fullness is still there in my left ear. I go to a local walk-in clinic where they advise both my tympanic membranes were bulging and I need to go on antibiotics. Ok. So today. I go to get a second opinion, and the doctor says ear look perfect. Is the medical symptom that much of a joke? How can one doctor says yes, apparently middle ear infection and then another say, no way? Amoxicillin would not clear a middle ear infection in less than 24 hours since that’s what the first doctor prescribed.

During all of this, I also visited a neurologist who said all of my symptoms sound like “a migraine.” But most of my symptoms, eye floaters, noise sensitivity, irritability have been there well before vertigo/off balance feeling. Also, I feel better with motion like in a car which I feel wouldn’t feel better with an organic vertiginous illness.
It’s like doctors/specialists have a hammer for every nail depending on their specialty.

Now, I am beginning to wonder if the off balance feeling post-BPPV is simply anxiety, something I’ve suffered with since I was 16.


#2

Yes. The ENT/Oto-Neurology scene is terrible because it’s so subjective. It’s a very underdeveloped arm of medicine and I was extremely disappointed and surprised by the lack of definitive analysis and solutions. Too many fanciful names which are just collections of symptoms and few are actual proven conditions with a known underlying mechanism.

And then as you have discovered if nothing perfectly fits the symptoms you’ve had they make up (literally make it up) some combo of conditions and expect you to buy it! Don’t. It’s BS. And a racket.


#3

Right, but what the hell do I have since there is no hearing loss, fever, or any more severe vertigo! I don’t believe it’s migraines. I only believe the headaches were coming from my ear because the tube is blocked.


#4

So you are still feeling off balance? If it’s too invasive and distracting you I would see if your GP will prescribe a low dose of Amitriptyline. Otherwise sit it out and it will probably get better without you doing anything.

I very much doubt it’s anxiety.


#5

It gets aggravated by computer use… i feel more off balance on the computer.


#6

That still sounds like inner ear upsetting your eyes. But no reason why it won’t settle down. Like I say, live with it and see if time heals or talk to GP or neurologist about trying Amitriptyline in first instance. It really helped my computer use.


#7

FDshould i stop taking the antibiotics? other doc said to stop taking them as i was misdiagnosed by doctor yesterday


#8

Inner ear infections are virtually unknown in the West. Vestibular neuritis and labyrinthitis are not thought to exist anymore and some other mechanism is causing those conditions. Definitely almost impossible to have a bacterial infection so deep in body. I believe you can have otitis media in your middle ear and that can interfere with the innner ear windows but that would show on your ear drum as blotches and an experienced ENT would pick that up.

What infection are you supposed to have?!

Jeepers!

What a crazy bunch of practitioners.


#9

The doctor’s assistant (doctor was then present during skype phone call to recommend prescription) suggested that both my tympanic membranes were bulging and this was indicative of middle ear infection. So I started taking antibiotics.

I see another doctor today for a second opinion, and he says eardrums are perfect. I asked if there was any way the antibiotics could have cleared the infection less than 24 hours and he said it was unlikely. He said I should probably stop taking them.


#10

I am just so confused - who to believe?? and should i stop taking them? Clearly, she could have seen bulging membranes or she wouldn’t have said that. Isn’t that a clear diagnoses?


#11

So if a middle ear infection was identified (otitis media) then it’s good they gave you antibiotics. This can cause dizziness. Probably interference with the inner ear windows. I would complete the course as prescribed unless you really trust the other doctor who’s telling you it’s definitely not that.


#12

It wasn’t an ENT it was a medical assistant and the other doctor was a walk-in clinic doctor. But isn’t middle ear infection or bulging ear drum pretty straightforward to look at ?


#13

You’d think so! How many people had looked up your ear canal before and not picked this up?


#14

Initially, when I had BPPV they looked in my ear back in June. But no one had (even the ENT had not) since then.


#15

Very odd. To be on safe side I’d complete the course. Then see how you go. Maybe get it re examined.


#16

Unless the antibiotics that I started yesterday made it appear reasonable to the subsequent doctor. I will finish them just in case.


#17

They say to finish a course if you’re already on them due to the antibiotics having a safe shot next time you are prescribed them.

Have you checked the list for the recommended neurotologists in your area? Sorry if this has been asked before.

Also, do you have random bouts of severe anxiety that last sometimes a minute or less or sometimes longer and you get a slightly off feeling and dizzy?

Also, I’m told I have VM by 3 different doctors (going to be a 4th since I will see Dr Rauch at Harvard). I went through all the testing, hearing, VNG, caloric and such… The only thing that got messed up a bit during my incident I noticed is my left ear-- noticed some weakness. It didn’t reduce hearing, but it felt full-- after a couple months it doesn’t feel full anymore I don’t believe (or maybe got used to it) but I have tinnitus now in my left ear and I’m slightly off balance sometimes, mostly in the dark or if I’m tired or just randomly. I get head pains now tho, but no true fever, but a cold sweat / flush if I’m being really symptomatic. Also I will get a raised heightening anxiety / fear feeling out of nowhere sometimes even if I’m distracting myself with something. It’s odd.

I’m able to drive and I noticed if I’m really dizzy then driving in motion helps me and acts as if it is no longer there unless I’m at a stop sign or stop light, then I notice a push and pull type feeling.

I was mentioning that because it’s very strange how we all have VM but it shows in different ways and we have somewhat different ways of coping with it or things we are able to tolerate doing.

I never had any of the symptoms I’m experiencing now before my situation happened 4 months ago.

I’ll continue to follow your thread and hope the best for you!


#18

Thank you. I’ve decided to stop taking them as it’s obvious there is no infection and I wouldn’t have had an infection for 6 months without fever or pain. Also she said both ears were like that even though it’s my left ear that’s full - doesn’t make any sense. I’ve only been on them a day and I think it’s ok.

They do a number on the body so I rather not.


#19

I am wondering if I initially had Labrynthitis.

I had an upper respitory infection, followed by a terrible headache which literally left be disoriented and dizzy. Like i could only focus on one thing.

Then I started getting the positional stuff… is there noise sensitivity and ear fullness with Labs too?


#20

I don’t think labs is diagnosed anymore by leaders in the field. Viral infections are in any case not thought chronic. I can’t see how a viral infection would lead to positional vertigo.