The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

The ENT Consultation from hell maybe?

”I started to feel odd soon after New Year. I would be walking the dogs and be unsteady on my feet. I began to hold on to trees. I wouldn’t look round to see if Mini Puppy had stopped to sniff, as that would make me dizzy.

”It got worse. I couldn’t get out of the car. I felt so dizzy in the Co-op, I’ve never dared go back. I’d wake up, and the stripe of light from the window seemed horizontal. I’d be watching TV and suddenly the room would spin. I would only have a minute to make it up to bed. Once I’m dizzy, I vomit for 24 hours. These attacks have grown more frequent: every few days.”

Read this by Liz Jones in ‘You’ magazine back in July and immediately thought she is probably ‘one of us’. Following her hospital scan she updated thus:

”if I get the all-clear and a cure for the vertigo, I’m determined to enjoy life. To not dread the walk upstairs. To be able to turn my head to watch Mini Puppy sniff. To go to the Co-Op without hanging on to strangers. That’s all I want. That will be enough”

I’d have hated to disillusion her about the ‘cure’ but her symptoms certainly seem familiar. Therefore, having it read, I felt I really had to post this link to her recent ENT consultation experience. She certainly was very unlucky. I wouldn’t want it to put anybody off attending a vital appointment. It can’t regularly be that bad. It will be fascinating to hear her eventual diagnosis.

3 Likes

Makes me angry that so many of us have had this same experience. I saw ENT 3 times and they then just said it was all in my head - like that was any help. I had to go private (thank you to my Aunt for paying) and got listened to for the first time in 13 years.

3 Likes

I’ve seen 2 ENT’s in London and neither of them said anything as dismissive (and clearly as preposterous) as that.

So I don’t think they are all bad.

One neuro-oto admitted to me that “we (science) do not know how the inner ear works”

Reassuring!! :sweat_smile:

From that I concluded that all bets are off.

1 Like

I only had good experiences as well. Before my major VM attack in May, I saw my GP for dizziness and visual auras and he said “it could be vestibular migraine and there is preventative medication available”. I decided that I can handle the symptoms and that I won’t take medication.

Then when I had my major attack which landed me in hospital for 4 days, the neurologist immediately said “this is vestibular migraine, but we need to rule out benign positional vertigo”. She asked a physiotherapist to come and see me and he supported the diagnosis of VM. She also offered medications (including pizotifen) which I all took.

2 Likes

You’ve been very fortunate in that case. All those enlightened people. Cynic that I have become I can say your experiences prove you are not a U.K. resident😉. I’ve had this condition since 2003 and it was only last year I first happened on a GP who recognised it and I’ve since actually had a consultation with another who does. I doubt you’d get a similar experience here.

Getting back to Liz Jones story I must admit to being amazed that any ENT consultant didn’t have a mask through which she could lip read. That is inexcusable. The fact that he was unaware of the existence of her scan came as no surprise. Same had happened to me with another ailment in the past. Worst part I can see is she’d waited 4 months for what then amounted to a ‘holding’ exercise making no discernible progress on the day. That I considered a total waste of an appointment. It will be interesting to follow her progress. I’m all but convinced she’s ‘one of us’.

2 Likes

For the sake of completeness I came across this little update in her most recent column

”I go to see the doctor in Harley Street, and after a battery of tests (a contraption is strapped to my head and I have to follow fora on a screen with my eyes), I am told I haven’t had a stroke. I don’t have a tumour. I have an imbalance in my left ear, and am prescribed water tablets, which should do the trick”

So I was wrong. It seems the lady isn’t ‘One of Us’ after all. Or is she?

What sort of diagnosis is that? And from Harley Street too…

Isn’t that much like saying ‘you have Vertigo’? Why is there an ‘imbalance in the left ear’? Unless some information has been withheld for her privacy which would rather make the entire exercise seem rather pointless to me I’m rather confused. The only other, possibly relevant info I know is the lady in question is extremely deaf and has been for many years. I’m sure I wouldn’t have been all that pleased to receive such a statement from Harley Street. Be interesting to see if her proposed treatment does indeed work.

Hydrops I guess.

Given the mission of this website of more recent times is to support all people with chronic vestibular conditions without a specific consistent underlying aetiology or diagnosis in mind perhaps she is?

That said, who says we don’t all have an imbalance in at least one of our inner ears? Even a transitory one.

I’d say in my case it is very likely. In anyone who has dizziness and significant tinnitus I’d say it’s a strong possibility.

Who here has had a test that can scientifically rule that out?

I think fluctuating Hydrops is likely to be a cause of migraines because it’s a condition that might distort and corrupt the learned correlation between inner ear response and movement and positional stimuli over time and irritate the brain, causing neurological symptoms of many kinds that might escalate to severe migraine.

What causes Hydrops? They don’t know. Poor serotonin regulation, stress, trauma, diabetes, blocked inner ear plumbing, auto immune response? So many theories …

FYI I did try a ‘water pill’ briefly but it didn’t seem to help.

1 Like

Ah, I see. I wouldn’t have linked

I did check out for more info on ‘water pills’ after posting. Interestingly I actually found a paper outlining why it can actually be detrimental to some people. I would never have linked ‘an imbalance in the left ear’ to Hydrops. I don’t doubt you but why if he meant Hydrops wouldn’t it have been easier to have just said so.

1 Like

Yeah, agree, perhaps he wanted to say “Meniere’s” but didn’t want to upset the patient?

(NB Hydrops and Meniere’s are often diagnosed as the same thing and this is not always the case).

Further confusion with this one and I was so convinced she was ‘one of us’ but just happened on a further reference to her ‘vertigo’ in another article. There she wrote of ”being diagnosed with vertigo, an imbalance in my left ear which is caused when crystals in the ear become loose. Hearing loss can apparently cause balance disorders …… prescribed diuretics. I’m not allowed to drink while on medication, and the ENT professor told me that alcohol can worsen the vertigo, and certainly not help my stress”.

Well apparently the treatment worked. In her current post in You magazine she mentions as an aside to comments on another topic that her vertigo is now sorted.

1 Like

I am completely deaf in my left ear. I’ve tinnitus and MAV. I’ve lost almost 62% balance in my left side, according to my test results.

Sorry you’ve had to go through that!!

Has anything come up on imaging?

Only the very highest res of the latest MRI’s can detect Hydrops, apparently.

I only had basic imaging done here. And nothing was on that except a small arachnoid cyst.

Where was the cyst located?

Somewhere in the left side of the brain.

1 Like

I was wrong. It’s on the right side.

Gosh. Are they going to follow up or leave it?