i have this weird burny, throbby dizzy feeling... - Behçet's UK

Behçet's UK

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i have this weird burny, throbby dizzy feeling in my spine and head. almost always. does anyone else deal with this?

freckles66 profile image
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freckles66
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devonshiredumpling profile image
devonshiredumpling

I've had that feeling in my head (but not my spine) for years. When I was working, before I was diagnosed, I would be walking down the ward and have to grab onto the safety rail. I describe it as like an electric vibration going diagonally across my head from my right hand jaw up to my left hand temple. At the same time my brain feels as if it's being squeezed. Whenever I get this squeezing feeling there is evidence of water retention in my face - around my eyes mostly - so I suspect that it might be some sort of oedema in that region.

Don't know if this matches up with what you're feeling - I've never tried to describe it before and it ain't easy!!

Di

billi profile image
billi

Hi, yes I started with this initially the head about 8 years ago a couple of years later it was also my neck and then my back. Went to GP who was not interested at all, told my Prof who said it wasn't anything to do with BD. After about 3 years of constant suffering and whilst on holiday in Spain, I collapsed and was rushed to A&E. They were amazing and took scans and discovered I had degenerative Sponylitis and started me on treatment immediately which I will have to take for the rest of my life. Having said this they did not understand why it was affecting me in other ways. Came back home and changed my GP and after 2/3 years eventually had a brain scan and another spine scan. Also was my Prof and all of a sudden although I do have deg spondy ithey now say it also Behcets involvement and are treating me.

Please don't worry as Sponylitis is mostly an old persons condition with age....but.....I urge you to check with GP do not suffer as I did, I had to give up the job I loved ...teaching because of head/neck pain and dizziness. Oh also nothing showed in my bloods urine etc!!!!!typical BD.

Hope this helps and let us know how you get on.

Hugs and Smiles

Billi

devonshiredumpling profile image
devonshiredumpling

Oh! I have cervical spondylitis too! I knew it caused me severe headaches (just cos I needed another cause...) but it hadn't occurred to me that it causes what I call 'my funny 'ed' - as in the frequent wail of 'Keith I've got me funny 'ed again.'

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