Permanent dizziness and imbalance

[connie26]

Following a sudden and severe bout of dizziness and vomiting a couple of years ago where I ended up in A&E, I have been left with a permanent slight dizziness and imbalance. I've had tests and scans but no diagnosis. Stress and tiredness definitely make it worse. I will often bash into things and feel wobbly when getting up off the sofa. Walking and especially going down the stairs can be challenging and I really have to concentrate. I tend to look at the ground when I'm walking as everything else when I look up moves or jiggles slightly. I'm so fed up as I know this will never go away. Just wondered if anyone has had the same?

I have chronic vestibular neuritis. And BPPV. Since 1988. 😭

I do the cooksey Caxthorne exercises. I only take medication when really bad.

Have you seen an ENT specialist? Mine retired several years ago and was passed on to someone else but he wasn’t as good.

I’ve learnt to live with it. Gets worse when I’m stressed.

good luck it’s horrid.

Hi, thanks for your reply. I'm so sorry you're going through this too. It really is awful isn't it? I'm just trying to accept and live with it. They ruled out CVN and BPPV but still no diagnosis. It's so strange, I almost feel like it was some sort of stroke. I was under a neurologist but never actually met him. He sent me for tests and discussed findings at MDT meetings but then discharged me without any conclusion 🤷🏼

Maybe ask for ENT referral. It’s a bugger but I have got used to it. Mine is one of the less than 1% that never recovers. Destroyed nerve in inner ear. 🤷🏻‍♀️

Good luck

You need to ask to be referred to a neuro otologist. They are ENT's with further specialist training in dizziness/vestibular disorders. There is a department in the London Hospital of Neurology in London. There are other neurotologists countrywide. If you do a search online it should throw someone up near you. It's a lesser known specialism but after 2 years of unremitting dizziness years ago, someone tipped me off. I eventually ended up referred onto neurology as they suspected a migraine associated vertigo diagnosis.

Don't assume dizziness isn't treatable, often you just need to get the right care and it can make all the difference.

It's imperative you get a diagnosis as there are many conditions causing dizziness but the treatment is different. I recommend The Vertigo doctor online to start working out what's what. She's US based but has free resources.
The menieres society in the UK have advice too. A neurologist should be able to diagnose and at least rule things out.

Have you had the Epley
?

Thank you all for your advice. I'll start doing some research. I was perfectly fine on my last day of being normal in December 2022. Went to bed and woke to my vision going berserk - my eyeballs were bouncing and I could barely walk. I couldn't stop vomiting. Even back in bed, I couldn't lift my head without throwing up. It went on for hours until they sorted me in a&e with antimetics and IV fluids. I can't remember now what it was like to feel normal. I can't say this in RL but part of me looks forward to passing away eventually as I'm tired of it.

Oh you poor thing. It’s horrid and I feel for you. Good advice from others. Good luck 💐

Yes, I've tried that and other exercises to try and train my brain. Nothing helps.

Sounds awful. I’ve had bouts of labyrinthitis and it’s awful.
I ran in the GPs crying one day convinced I had a brain tumour ( I didn’t thankfully)

I've had two dizziness conditions. Maybe you have one of them:

1. PPPD. It's common and easily cured but not many GPs know about it. I saw Dr Louisa Murdin who is a specialist in audiovestubular medecine at Guy's hospital in London. The cure is specialist physio and anti-anxiety drugs.

1. ME/CFS. Fairly common but Not curable. Symptoms are similar to fibromyalgia. Apart from fatigue, my main symptom is dizziness. Your GP will have heard of this but probably has very outdated information. If you think you have this, you need to be referred to a specialist clinic. For more info, see meassociation.org.uk/

Thank you for this information. I feel like I can relate to the symptoms of PPPD.

@dizzydizzydizzy was Dr Murdin good?

Just to say OP that you can get specialist physio for pppd on the NHS.

Yes Dr Murdin was amazing. All the treatment was on the NHS.

Oh that's good you got to see her on the NHS! Lucky you!

Have you tried a cranial osteopath? Some people get some relief via that route.
I really wish you the very best and hope you find some relief - my mother has this and it was debilitating