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From: Becca
Marie,
Your new episodes sound like the ones I've had ever since my tilt table test. In fact they got so much worse after the tilt table test that I have been told never to have one done again.
Mine is also caused by strobing, though I have never been allowed an eeg (they are positive it is just vv and an eeg would be a waste of NHS money).
I did ask my dr why and he said that the condition can go through phrases of getting much worse and then much better. So hopefully it will get better!!!
As I live alone and have no family support I know exactly what you mean about losing your job and independence. I lost my last job because of this condition (they wouldn't trust me as they thought I was just doing it for attention and kept sending 'alerts' to everyone about me, as they refused to give me work to do personnel fired me), I was unemployed for months and unable to get a new position (because of vv) or any kind of disability. I've been forced to lie to my employer about my health so I can keep myself off the street (as I have nowhere else to go if I can't afford my rent). This condition is costing me a fortune. My drs just don't understand that because of the debt incurred as a result of this condition I just couldn't afford to live in any kind of housing on disability.
Becca.