Although my vasculitis was not diagnosed as cerebral, from comparison with other people on this site it appears to be. It's onset was sudden with violent headaches and 4 days of intense stomach cramps, in Sept last year. In Nov after about 10 weeks of crippling headaches I was diagnosed and put on a two weekly reducing regime of steroids starting with 60mgs. It never took away the feeling of intense, vice like pressure in my head but it kept severe headaches at bay and I was definitely functioning better.
At 8mg I seemed to get worse so my neurologist advised I returned to 12 and a half, but said I was the only one who could really tell when it was bad enough to have to go up again. I hung in on 8mg and for a few days it seemed to get better. I even felt so 'almost normal' (for the first time in 6 months) that I cleaned my gutters and did some gardening but, as I have just learnt from this site, it was a hot day and I have now plunged again into feeling like I have a meat grinder in my head.
So I have given in and gone back to 12 and a half, which I am advised to stay on now for a month. What I'd like to know is if the steroids are supposed to make us feel normal in the head, or do most people have 'meat grinder' symptoms all the time and we just have to live with that? I guess I'm trying to work out if the 'meat grinder' is part of the disease, regardless of what we are taking, or evidence the steroids aren't working, thus requiring a higher dose. And if so what is considered high and how long can we stay on it?
Also when people speak of flares do they mean a sudden onset of symptoms as I have just described, and when that happens do they increase their dose, or hang in there on the dose they are on and wait for symptoms to abate? My specialist is very hard to get to see for these day to day questions, and I am not in the UK where you seem to have much more information about the disease, so forgive me if these questions are niave.