9 year old!! Help

[Sarahxxxx]

Hi
My daughter is 9 years old, she has been suffering with headaches for around 3 years.
She gets headaches with sickness and dizziness. Thought they were migraines as they happened once every 6 weeks
Last 2 months they have been getting worse, headaches with sickness every day. Once or twice a day, dizziness, memory loss, behavioural changes, confusion, slurred speech, balance issues,pain in left leg and blurred Vision. The pain is that bad she has told me she wants to kill herself because she can't take the pain. I have been to the gp and hospital. She has had a ct scan which showed her skull was fusing early (something that happens around late 20s) and a small incidental cyst was shown on an mri. She didn't last too long in the mri as the nose was too much and she ended up with a massive headache and was sick. She was only in there 10 mins and some images were blurry. Has anyone had anything similar who can offer advice.
Thank you :-)