I live in the UK too, but i am lucky that i have a GP who is understanding. The best thing to do is take print off’s about EDS and the issues you want to bring to your Dr’s attention. If you GP is unwilling to listen i think you need to change your Dr. I have seen Dr’s privately in the UK and on the NHS,so waiting to see a consultant can be a long time. The person you should ask to be refered to is a Prof Rodney Grahame, he is the UK expert in EDS (there really are not many) If you can see him he will hopefully be able to help in some way. It sounds like you need to be refered to a nuerologist or ENT in too in my opinion. With having EDS its very common to have headaches of many kinds. I know a name of a Nuerologist who has experience with EDS patients if you want to PM me.