Thanks Barbara, I shall try the tilt test when I am home. I am having a rough few days, the right side of my body seems to be much more affected have to say. Even my right toenail is going black! All the aches and twinges are all that side, and the irritable bladder welll, i feel that is having a vagal affect too and is in itself so debilitating. I have decided to pay for an MRI before I leave, need to rule out anything sinister. Never had a head scan and despite the constellation of all these symptoms I am undiagnosed, so need to rule out a brain tumour first, then hopefully they will see if there is anything else going on. I am also having a CT of the head, this is as a precaution as I had ear surgery to remove a cholesteatoma last April in left ear and reconstruction of the ear drum, they want to check there is no metal in there. Hoping I also don’t faint at the next scan!!
I need to work on my posture, make an effort to sit up to watch tv, to take my head out of flexion. I will buy a neck pillow for my flight home, and look into other options when I get home. I know diamox helps your headaches, but I cannot get this yet. I will need a diagnosis or be closer to it. Did you find that anything helped your headache? For the flight? Probably not. I do wonder why I don’t always have a headache every day if i have raised ICP, you do with brain tumour often, iI might go 4-5 days then I have another, but when I do it makes sense that it is raised ICP. Usually there on waking, continues throughout the day, bit nauseous sometimes very, limited response to NSAIDS or codeine, but can ease it temporarily sometimes, headache then often fades in the evening. The intensity of these has definitely increased. Oh what a pickle!!