Need a diagnosis

[htdt]

I have had an issue with my left ear for the past year and a half. My doctor and ENT specialist don't know what it is and I've just been left with the symptoms.

It started with bad tinnitus in the left ear, which after a month I realised was causing a reduction in hearing in that ear as well. I never had any pain but initially the doctor said ear infection and I had lots of different antibiotics which made no difference.

After a few months I then started to also get really bad dizziness along with the tinnitus and I took another load of antibiotics but it just kept coming back and that's been how it is for the past year.

I might have a week where everything feels ok but then it's back again, bad tinnitus, dizziness which can sometimes be so bad that I vomit because of it.

Sometimes it feels like a squeezing in my head or pressure like being pushed downwards, just before the dizziness comes on. Sometimes I get a headache on the same side, sometimes I have a sore throat afterwards??

I can have the tinnitus for days and no dizziness and then it goes or have the tinnitus for an hour and then get the dizziness.

The dizziness can sometimes last a few minutes, sometimes hours....

I am feeling really desperate as it's been so long that I've had this and nothing has made any difference. I've done steaming, popping my ears, nasal spray, saline rinses, otovent balloon...

Has anyone else had anything like this, have you had a diagnosis and does it ever get better?

Can you request a referral to neurology?

Have you had an MRI?

Get An ENT to investigate for Meniere’s.

What kind of tinnitus is it? Is it constant noise or a pulsing sound?

It very likely isn’t, they’re not very common, but I’d want this ruled out.

https://www.cancerresearchuk.org/about-cancer/brain-tumours/types/vestibular-schwannoma#:~:text=Vestibular%20schwannomas%20are%20also%20called,the%20brain%20to%20the%20ear.

The ENT surely should have done an MRI with those emerging symptoms, so I’m presuming it’s done and clear and that’s why they are baffled. But yes, if not done (??) push for that. It will likely show nothing but needed just to exclude a few very rare possibilities.

I have had an MRI of my ears which was all clear and I've had an ultrasound of my neck, again all clear.

I'm trying to get reseen again at the ENT as they did say if it hadn't cleared after a few months or got worse I could come back.

When I have the tinnitus it's constant, but I don't have it all the time.

My DH suffers from tinnitus, he also has a perforated eardrum. He gets dizziness and feels sick. He has been diagnosed with vertigo and has throughout the years suffered a few bad spells. He takes medication for this, it gets better for a while, but the tinnitus never really goes away. His ENT specialist recommended he have surgery to close the eardrum, but there’s no guarantee of it working.

sorry to hear about your husband, yes not nice to have surgery if there's no guarantee it'll work.

Can I ask what medication he takes, and if it helps?

My tinnitus does go away, that's what I really can't understand, the symptoms I have almost totally disappear, sometimes for a week or so, but then it's all back again and there's nothing obvious that I'm doing differently, or eating or anything, it seems totally random.

He takes Prochlorperazine, it helps with dizziness and feeling sick.

Thanks, does he only take it when he's getting dizzy or does he take it all the time?

Menieres seems at least possible.

My tinnitus does go away, that's what I really can't understand, the symptoms I have almost totally disappear, sometimes for a week or so, but then it's all back again and there's nothing obvious that I'm doing differently, or eating or anything, it seems totally random

That fits Meniere’s. I would be pushing for an investigation accordingly, as anything ‘sinister’ should have been ruled out with the MRI. Yep, prochlorperazine, as another poster pointed out is what is used for the vertigo and associated general effects. It’s used prn only, not as standard. There’s also a little trick when taking it but it’s irresponsible to offer medical advice here, however if you surf around places like Meniere’s forums or similar, you will probably find it - please do not PM me as I won’t respond. I’ve found most Dr’s don’t tell people about it (don’t know?), but specialist units generally do, so stuff like this is always hit and miss with general ENT’s. Specialist units for stuff like Meniere’s are also better versed with effective dosages than general ENT’s as well.

Thanks, I've thought it might be menieres but when I suggested that to the GP they said no because my dizziness is not true vertigo, because mine is not like spinning around, more like how you feel after spinning around.

I still think menieres is a strong possibility and also my symptoms strongly match acoustic neuroma but again as I've had the MRI that's been ruled out.

Anyone with either of these willing to share their symptoms and how they got a diagnosis.