The Vestibular Migraine & Secondary Hydrops Community
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Bad ENT experience


Yes, I was told it only comes back 60% of the time. And that steroids should be started asap (even tho there’s no proof they work). Yes I consider myself very lucky.


Interesting they did not inject steroids into the ear and preferred oral…for SSNHL i read injections are preferred


My goodness that’s rough for the 40%


I was told they try oral first then inject if no success. A lot of ENT offices don’t do them, and I would’ve had to be referred out.


Yes. Of that 40%, I believe 20% recover some hearing. The other 20% recover none. The only fortunate thing is that SSNHL is a rare event from what I’ve read.


Yes, anxiety is likely the main cause IMO.
You responded to steroids which are anti stress substances. Two well known internally produced steroids are cortisol and adrenaline. These were meant to help you short term. If they remain elevated over long periods due to hidden stressors then they will ravage your body surreptitiously.
If they cannot be produced by the body
you experience adrenal fatigue which is not good either.
Do you color your hair such that the toxic liquid comes in contact with your scalp?
If so try not coloring for a few months.
Even henna and indigo are not advisable because of their strong astringent and dessicating effects (i.e. tinnitus is almost unavoidable with astringent powders or oil mixes on the scalp).
The importance of NOT coloring your hair cannot be overstated, if you want to see real improvement with anxiety and vertigo.

Slow down your breathing as much as possible, and breathe through your nose only, especially at night during sleep.
Have someone check if you snore or sleep with mouth open.
Frequent sighing, gasping, coughing, sneezing, are nothing but barely noticeable manifestations of hyperventilation which mess up the composition of your blood.
MAV would be the least of your problems if CO2 and O2 have abnormal ratios in your tissues.
Watch out for barely noticeable hidden stressors and make radical changes to avoid them.
3 months ago I quit my well paying but stressful job and took a 7% cut to join a chill company nearby, definitely have seen improvement since then, even my wife said so.
Good luck.


How could he diagnose him with VM if he said he didn’t believe in MAV.?


I did not see in Young_Lee’s post that his oto did not believe in MAV. I just saw that he didn’t mention VM during the extensive exam, and that his Dr explained a lot abt how the ears work. I was curious what this older Dr out of retirement thought was the diagnosis.


There are two levels to a diagnosis of MAV/VM:

  • It’s saying you conform to an internationally recognised classification based on your constellation of symptoms.
  • Some (possibly most, but not all) doctors believe the root cause of this condition is migraine. It’s fair to say this is the ‘professional consensus’. Some doctors are very reluctant to deviate from this and you could imagine they would be particularly uncomfortable to discuss this with patients.

The aetiology of MAV/VM has not been definitively determined. Migraine as a cause is a very popular hypothesis.

In any case, migraine is very prominent in this condition and it is thought to harm your ability to compensate. Compensate from what though? You might well ask!

Put another way, if you have this constellation of symptoms, according to professional classification you will be given a diagnosis of MAV.

Things aren’t quite so cut and dry though:

If you have any level of hearing loss, that breaks the strict rules, but nonetheless a lot of doctors ignore this.

Things also seem to depend on who you speak to.

Go to 5 different doctors and opinions are likely to vary!

Not all doctors are happy to tow the line.

One comment from one of my consultants was ‘I could send you to some other colleagues of mine [on Harley Street] and they will tell you this is hydrops’ …

The big takeaway though, is you must treat the migraine!


Yes, and this is the problem!!! The treatment for hydrops and migraine are different. There’s nothing I’ve read about using low sodium for migraine, but evidently it helps some with hydrops. Same with the intratympanic steroids… No indication for migraine, but decent results with hydrops. The migraine diet is already strict enough… I wouldn’t want to add low sodium if hydrops is NOT what I have. And the ear injections are not without risk, so u wouldn’t want to use them with VM.


Well let me clear that one up, fairly easily.

Firstly, hydrops <> Menieres. Hydrops just says ‘pressure in inner ear is higher than it should be’. Thats it.

So having ‘hydrops’ does not condemn you to degenerative hearing loss. The natural history of hydrops has not yet been determined, either!

Afaik, low salt treatment for inner ear health is a proposed treatment but there is no definitive proof it works and definitely no proof it works for Secondary Hydrops.

I have noticed times when a salty meal might have had an impact, but other times it’s done nothing to me, nor 2/3 of a Pringles can!

Also, the efficacy of diuretics is also not established according to Cochrane review.

So it’s rather moot if MAV = hydrops in many ways because it doesn’t change the treatment.

The treatment protocols for MAV ARE reliable because they are based on clinical data. This is the part of healthcare that’s straightforward to determine.

The hard part is knowing the root cause.


Sniko, I agree that stress can make this worse. Stress can make any disease process worse. And stress can come in both physical and mental form. But I disagree that all the symptoms I listed can be symptoms of an anxiety disorder (GAD or panic disorder). From what I’ve read on dizziness and anxiety, the type of dizziness that results directly from anxiety is more of a floaty, derealization experience, along with some lightheadedness. I have more of a disequilibrium and bumping into things, along with quick spins occasionally. These are not all the time- seem to come randomly in attacks and last abt an hour or so. Sometimes milder and much longer. During these times, the tinnitus cranks up in my left ear only. I also get sinus/temple/ear pressure and eye tearing and eyelid twitching all on left side only. Sometimes visual disturbance like wavy vision, and sometimes a sick headache at the base of my skull. This can all definitely cause anxiety which can worsen things. But I don’t believe that anxiety disorder, in and of itself, is the source of these symptoms. But I do think stress triggers them (as it does with most established diseases). And I believe I would improve as well if I could get out of my toxic and stressful work environment.


this can cause a different kind of “hydrops” of fat in the stomach :stuck_out_tongue: :stuck_out_tongue:

Personally i used a bucket of popcorn for the excess salt test to see if my VM becomes worse.


OMG Vigs tell me about it!


Agreed, stress will trigger attack. Anxiety is great for ratcheting up existing dizziness. When I was near agrophobic a couple of years back and was 24/7 dizzy and hadn’t walked outside for a day or so … the very thought of going outside going through my head would increase the spinning many times and in a fraction of a second. As a person who has never been at all anxious/nervous, I couldn’t believe it myself.

You are right in yr description of anxiety related dizziness I’m sure and YOU are the best judge of your feelings and YOU know which came first, the anxiety or the condition. MAV, indeed any chronic condition, is enough to make anybody anxious but that’s effect and not cause.

If in doubt keep a diary for a few days. Are you particularly stressed before it kicks in.

IMHO you sound as if it could be MAV. Sinus pressure, ear pressure, eye tearing, visual disturbances, coukd easily be MAV.

MAV constantly changes its form. It morphs.

The neuro-otologist I saw was very specific about getting the correct definition of ‘dizziness’ and ‘vertigo’. Obviously it’s very diagnostic. I’m not medical, just a long-term sufferer but I know definitions vary country to country which isn’t surprising as I’ve seen them vary individual to individual. The specialst who diagnosed me was very keen to establish whether or not I had rotary spinning ie vertigo. He implied that together with a past history of migraine and dizzy attacks that were keeping me in bed and then, much later in the morphing process, 24/7 vertigo meant it was migraine. You don’t have to have headaches to have MAV. Some people have headaches with the attacks and some independently of them and others, like me, no headaches at all.
‘Silent’ migraine, it’s sometimes called. You don’t have to be spinning all day to have MAV. It can be episodic as well as chronic. My first attack was just a few seconds of vertigo like BPPV, then I had attacks lasting 24-72 hours constant spinning, these gradually became more like migraines with dizziness instead of headaches, then many years later bits of balance issues between acute attacks and then 2014 an attack which left me 24/7 spinning. So they evolved over time. In my case some considerable time, nearly 12 years, but everybody’s different.

Go check it out with a neuro. Prepare a detailed history, in your head at least. Be prepared to give very accurate description of the dizzy feelings etc. Might be worth doing a time line. Good Luck.


Extra salt makes me feel better.


Fan of Pringles too? :wink:


How can you not like Pringles? I can’t even buy them. I have no control whatsoever.


I think we need to start a new forum just for Pringles addicts. I’ll be sure to invite you.


Please don’t. I’m white knuckling it as it is!