Lightheaded and getting worse.

Hi John,

So sorry to hear about your problem. I'm 75, and I know how frightening vertigo can be. I realise your case is different, but I had a bad attack of BPPV three years ago, so I can sympathise. Vertigo is vertigo, whatever the cause - and there are many different causes.

I'm wondering why you're posting this on the dementia boards. Vertigo isn't a symptom of dementia, and it's clear from your post that you don't have dementia anyway. There's an excellent vertigo forum on this site, which I visited myself when suffering from BPPV. They talk about all kinds of vertigo, and I'm sure you'd find some helpful information over there.

I discovered that a lot of people over on the vertigo boards have a poor opinion of ENT specialists when it comes to vertigo. I'm inclined to share this opinion. As a former nurse, I realised quite early on that my vertigo was down to BPPV, so took myself off to seen an ENT at a major teaching hospital. (I live in a country where the health service permits self-referral to some specialities.) I was seen by a young man who communicated mainly by grunts, who looked in my ears and pronounced that one ear was partly blocked by wax (which has nothing to do with vertigo). He had his nurse syringe out the ear, then a hearing test was performed - always useful at our age, I suppose. I was then called back in, to be told my hearing was OK and the consultation was at an end. Before I could say a word, the attendant medical student grabbed my arm and frogmarched me out of the room, scattering my belongings everywhere!

I then went to my excellent GP, who said I should have gone to him in the first place, as in his opinion ENT specialists were "plumbers" who were generally useless at dealing with vertigo. He referred me to a specialist vestibular physiotherapist, who cured me in a ten-minute session.

Clearly, you don't have something as easily-fixed as BPPV, but there are many other conditions that cause vertigo, and that can be helped. Ideally, you should see a neurotologist. As the name suggests, this is a doctor specialised in both ear and neurological conditions. (Vertigo is often caused by neurological problems arising either in the ear or the brain.) They often practise in balance or vertigo clinics in major hospitals. I know these exist in the UK - which is where I'm guessing you are - as many of the Brits over on the vertigo boards had been referred to this type of clinic.

Having worked in the NHS for ten years (many years ago) I understand how difficult it is to get British GPs to make referrals. However, you do have a right to insist on a further referral, and it should be to a neurotologist or a balance/vertigo clinic. Failing this, you should demand to see a neurologist, as the problem might not lie in your ear. I know just how intimidating doctors can be, but you really need to get another referral before this gets any worse. Vertigo can be the result of old age, but this should only be the fall-back diagnosis when all other avenues have been explored - which clearly isn't true in your case. In the meantime, I'd suggest going on the vertigo boards. It may even be that someone over there will know where to find the nearest vertigo clinic for your area.

I hope you manage to find the help you need.

Thank you for your quick reply Lilly. I put the problem on to the dementia page because the doctor said the problem was simply due to old age, and dementia sprang to mind. The ENT specialists ruled out BPPV because my light headedness is constant, not just for a few seconds - and there is no spinning as in vertigo. Its a bit like being drunk but without the pleasures of being drunk, another description maybe like hyperventilation when I've blown up too many childrens balloons. I will take up your suggestion of seeing a neurologist because when I have a really bad attack I find my hand and legs starting to shake. You have guessed I am in the UK and I can " go private " without a problem. Another thought is to have an MRI scan - would you agree with that.